Tag: autism awareness

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What I Wish I had Known as a New Autism Mom

What I Wish I had Known as a New Autism Mom
What I Wish I had Known as a New Autism Mom

Later this week, I’ll be taking Casey and Rob to their annual neurology appointment. I just realized that I have been making this trip – two hours from home – for 29 years. Casey was 4 when she was officially diagnosed and I was nine months pregnant with Rob. For the first two years, I had to take Casey every six months, then, when things got especially crazy for her, we went every three months for two years. By the time Rob was diagnosed, we were back to once a year.

I was thinking about the mom I was way back then. I remember being in the doctor’s office and not being too upset when he said “autism.” I had a pretty good idea before we went and, honestly, my biggest concern was to make it home without going into labor. She wasn’t sick, she wasn’t in pain. How bad could autism be? (remember – this was before everyone knew someone with autism and not much information was available anywhere!)

Casey was already in speech and a special needs preschool so there wasn’t much I could have changed. She adored Mandy and she loved her teachers. She was fearless. At that point, she just wouldn’t say much. Again – how bad could autism be?

If I could talk to that young mom from back then, I have so many things to tell her.

I would tell her that there would be days that autism would suck. That there would be days she would sit on the kitchen floor and cry from exhaustion. That sensory meltdowns would be terrible – that she would feel helpless and alone as she tried to help her beautiful little girl.

I would tell her that autism is amazing. That every day, she would find something to be happy about. That she would never take for granted a smile or a hug. That she would be happy with any words – even the ones that Casey shouldn’t say, just because she was talking! I would tell her she is stronger than she thought.

I would tell her that there are more good people than bad in this world, but that bad people are louder and meaner than she could imagine. I would tell her that standing up for her daughter would be hard and she would make people mad – but she would learn to not care. I would tell her that, even as she hated being “that mom”, people would come to respect her strength for fighting for her kids.

I would tell her that it doesn’t matter what others think. That Casey had every right to go places and try new things – and if someone didn’t like it, tough. I would tell her to not be embarrassed about autism. That she should live her life as she wanted and show Casey a world that wasn’t quite ready for her.

I would tell her she would experience lows that she wouldn’t think she could get through – but she would. I would tell her the happy times would far outweigh the bad, even when she felt the bad times would never end. I would tell her to keep dreaming for Casey, Mandy and Rob – that they would be fine.

I would tell her to ask for help when she needed it – that it’s good to be strong, but it’s okay to need help, too. I would remind her that her family was only a phone call away – she just needed to pick up the phone and ask. I would tell her that she can’t imagine the hurts that she will have to deal with – but that she would deal with them and move on…. stronger and happier than ever.

I would tell her that the struggles would be worth it. That she can handle anything. That when she worries, it’s worries that Casey and Rob don’t care about. I would tell her that Casey and Rob (and Mandy!) would struggle, but she will be able to help them. She will teach them strength and resilience and kindness and fun. She will laugh with them – she will be messy with them. Most importantly, I would tell that young mom that her kids will be okay. They will be amazing.

I would tell her that professionals aren’t always right – she will know her child better than anyone. It will be hard to stand up to them, but she can do it!

And that’s what I want all new autism parents to know. You will struggle. You will cry. You will be furious and hurt and tired and stressed. You will also be blessed to be able to be grateful for the little things in life. You will see the magic in every day, because your child will show you. It may be hard to see at times, but you will learn to see the love and you will know that through everything else, autism won’t define your child any more than the color of their hair.

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Autism and Remember When….

Autism and Remember When

I met a mom last week who is just starting her autism journey. Our meeting was a video call and she kept apologizing as she had to interrupt our conversation and help her child. She was obviously overwhelmed and exhausted and not sure what to do first or next or after that. I remember those days and wonder how we made it through certain times.

We have been watching family movies and I see Rob in constant motion – bouncing from one thing to another, usually with ear piercing happy squeals. And if we aren’t at home or at Grandma and Grandpa’s house, someone is right with him at all times. Casey is quiet in the movies. She has a super quiet voice – almost as if she is afraid someone might hear her. And it makes me sad. For family gatherings, she is often on the outside – she was encouraged to join, but for her, being on the outskirts was “safer.” Once in a while, she ventures closer, but not often and never if it is a noisy group.

Mandy’s birthday videos are full of parties and friends – Casey and Rob had cousins at their birthdays some years. I know they didn’t care – that they really didn’t enjoy being the center of attention, but still, sometimes, it makes me sad. I know it’s just their autism, but I wonder if they wished they had friends come to the house. Somehow, I doubt it. As I’ve shared before, Mandy’s best friends included Casey and Rob in everything they wanted to join and I can never thank them enough for that. Rob and Casey often mention Kenzie and Kelsey and Ryan.

As I was listening to this mom talk, I thought about the nights when I rarely got more than an hour of sleep at a time and when I did sleep, it wasn’t a deep sleep, as I was always listening for them to be wandering the house. I remember when Rob wore jeans and regular t shirts and a ball cap every where he went. Now, I know the ball cap was a security thing for him – he was never without it. He slept in it and it went back on his head before he got out of bed each day. I remember when going into stores was painful and scary for both of them and how I never thought we would be able to take any kind of vacation.

I remember the exhaustion of the school calling every… single… day. Some times, it seemed it was for the dumbest reasons. Once, when Casey was in 1st grade, they called and told me she was “stuck” on the second floor of the school. When I asked how that was possible, I was told she wouldn’t open her eyes to walk down the stairs, so she and a teacher were sitting at the top of the steps and had been for a few hours.

I told them to get her hand and start walking and she would open her eyes, but they wouldn’t. I had to go to school and walk her down the steps. She pulled that closing her eyes crap with me, but I started walking anyway – and guess what??? She popped those eyes open! She wasn’t allowed to go to the library for several weeks because her teacher was worried she would do it again. I wanted to scream at that woman. Casey got exactly what she wanted – no math class that day.

Most days, I think it’s a miracle that Rob and Casey are doing as well as they are. There were no supports, no information (unless you counted the books that blamed autism on moms not loving their children enough 🙁 ), no internet (not that you can trust everything you read on it!) and few doctors who had ever seen a child with autism. We guessed and schemed and made up things every day that might work. At that time, it was also assumed that every person with autism was just like everyone else with autism.

So when Casey started her screaming meltdowns, I was just waiting for Rob to do the same. It was a rough few years.

But, today… Mandy and I took them to a pool and spend a long afternoon together as a family. I never took my eyes off of them (and to prove autism is still there – at one point, I asked if they needed the bathroom and both jumped out of the pool. Because they had never used the restroom there, they assumed there wasn’t a bathroom). We still had to remind Rob to not bounce and splash when people were close and had to watch that Casey didn’t try to eat all of the snacks we brought when she thought we weren’t looking (I truly believe she thinks I’m blind and dumb at times!) but – they had a wonderful time!

I could actually let Rob walk back to the pool by himself while I waited for Casey to come out of the bathroom. (I had him in sight the whole time) Not many years ago, I couldn’t have trusted that he would go back to Mandy and not help himself to other people’s snacks along the way. Or that he wouldn’t take a flying leap into the pool, regardless of whether he landed on people or not.

So this is all part of what I told the mom. That she will have hard times (what parent doesn’t?), but that she and her son will get through it. Maybe not exactly like we did, but in their own way, on their own path. I reminded her to call me when she needed a shoulder to cry on or an ear to vent into. I wish I had had another autism mom to talk to when Casey was diagnosed. I didn’t meet my “autism mom” crew until Casey was 8 and Rob was 5 – now I don’t know what I’d do without them.

Find your own crew. Whether in person, on the phone, on the internet. Lean on them and let them lean on you. Message me. I’m always looking for new friends that understand the life I lead. 🙂

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Autism and Family Fun

Autism and Family Fun

Today has been a good day. It’s one of those days that, when Casey and Rob were little, I never dreamed would happen. These days do happen more often now and I thank God for that as I’m so grateful to see Casey, Mandy and Rob having fun together, with autism present, but not the main thing.

Mandy and I decided to take Casey and Rob swimming today. The pool is small, but close to our house and Casey and Rob both enjoy it. (Honestly, I think he does more than her. She likes to go anywhere – and instead of focusing on how great the water felt, she was wondering what snacks we brought. 🙂 ) He wants to run and jump in as soon as we get there, but I make him walk down the steps so he doesn’t land on anyone. 🙂

He got almost to the bottom of the steps and fell in the pool like the Lipton tea commercials – the person falls flat in the water? And then he was off to “his” part of the pool. He had his ball and an empty area – he was in heaven. He was sitting under water and bouncing up and down as high as he could go. Water is amazing to him – the pressure calms him down and he loves the feel of bouncing. Water play is sensory heaven to him.

Mandy was watching them while I went to get more sun screen. When I came back, I saw a funny look on Rob’s face. He looked at me, then back to the other side of the pool and I saw why he looked odd. His aquatic therapist, Erin, was there! He was amazed that she was at that pool and not in “her” pool at the hospital. Even after we got home, he was giggling about Erin being at the pool. And reminding me that tomorrow is Erin day and he needs his swimming stuff in the morning.

One of the best parts of the day was that Rob wanted to play catch with me! I’m not sure when we played the last time – and I know it wasn’t for more than an hour like today! Every time I thought he was done, he asked for more. I loved it! And then, to make it even better – Casey played catch with him! They only played a few minutes, but again, I don’t know when the last time they did an activity like that together was. (They do things together, but often, they are together, but not necessarily interacting with each other.) I looked at Mandy and told her that no one else in the pool realized they were in the presence of a miracle. 🙂

I share this with you to remind you again that you have to keep trying to take your child to new places. Trust me – I know it’s easier to stay home when there may be a meltdown, but your child will never learn to adjust and cope with their sensory needs if you don’t give them a chance. I’m sure a few of you are thinking that I have no idea what your child is like and you are right. I can only tell you that Casey and Rob both had major issues with stores and restaurants when they were younger (and still do, at times!) but they have learned how to cope.

They only learned that by trying and failing and trying again. We had some ugly times in stores. We got some terrible looks and even worse comments. And, I’ll admit, there were times I didn’t try, simply because I was tired and couldn’t deal with it. There are still times when I know Casey or Rob is having a rough day that we avoid going out. It’s just not worth it. If your child is already stressed, trying something new is rarely a good idea. And don’t try when you are tired or stressed.

But – try again. And again. You will have bad times. We did. You will gets mean looks and comments. We did. But, Casey and Rob are doing amazing now because we did keep trying. We celebrated the good trips and tried to forget the others. It’s not easy. Autism is not easy, Being a parent is not easy.

Start small. Maybe a five minute trip into a store to get something your child loves. Build up into longer trips. Celebrate the small victories and plan your next trip. You can do it! Your child needs you to do it!

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Knowing Everything about Autism

Knowing Everything About Autism

Did you know that I am an expert about autism? Yep – I was told that last week. After all, I have lived with autism for more than 30 years, I have two kids with moderate autism and lots of friends with children who have autism. And – let’s not forget I write this blog every week. So – I am an expert.

Yep – I am sure of it. I should write a book and I should charge for sharing my vast knowledge of everything autism.

I’m sure people would pay for my “blind leading the blind” approach, aren’t you?

Seriously, I could hardly write those sentences without giggling.

I am no expert. No one is. And if they tell you they are…. well, take that with a grain of salt. Because – yes, I may be an expert with Casey and Rob and I may know Tyler, Brandon, Cyrys, Adam, and Riley really well, but I am not an autism expert. Doctors know a lot, but no one knows your child as well as you do. And you will still mess up. Take yesterday for example.

We had just gotten back from shopping and Casey was trying to tell me something about Monday. Over and over she repeated what she meant and I couldn’t for anything understand what she was saying. I finally asked her to spell it – obervece. She was saying “aubervent” and I felt terrible that she was getting worked up because I couldn’t help her.

I finally text Mandy and she figured it out. Observance. She brought a slip of paper home Friday that was a reminder that their day hab would be closed Monday in “observance” of President’s day. So, Casey wanted to do some “oberservancing” – even though she had no clue what it was. I tried to explain it to her that each President had a different birthday so they “observe” them on one day in the middle.

And then – this expert of autism made a terrible mistake. I said to her it would be like celebrating her birthday a different day in March. The look on her face told me I had just screwed up. She sat straight up and reminded me 15 times when her birthday was and even when I promised to have her party on her birthday, she couldn’t let it go. She asked me several times before she was finally able to relax.

I should have known better. She loves her dates and birthdays are sacred to her. I royally messed up and she couldn’t let it go. I couldn’t fix it. For over an hour, she kept popping back into the room to remind me when her birthday was. Finally, I snapped and said, “I know when your birthday is – I was there!” Which, of course, made her stop in her tracks and think about the party that must have been happening that day. She is slightly irritated that there are no pictures of the cake and no balloons. I reminded her we were in the hospital (she knows this as she has told me before that she “got born, got cold and cried” in the hospital.

Finally, I was able to distract her with the reminder that we would be going to grandma and grandpa’s soon. And I mumbled to myself. I knew better. I knew to never bring her birthday into conversations unless it was a fun discussion. This “expert” mess up. Luckily, this was not a big deal, other than a drawn out conversation.

But, it’s also a good reminder that no matter how well you know autism, you will make mistakes. And again, no one knows your child like you do. Make doctors and teachers listen to you. Listen to their ideas (as sometimes, fresh eyes can see solutions you can’t when you are so close to the issue) but make sure they listen to you, too! Be willing to try – but also be firm if there is something you know won’t work.

There are “experts” out there that refuse to understand that they don’t know everything. It’s their way or no way. Find another expert. A true expert knows that they don’t know everything and are willing to learn from you and your child. I’ve been so lucky – only one teacher was an “expert” and she didn’t last long. And our doctors are amazing.

I’ve learned something from everyone I’ve meet on our autism journey. Some things have been more useful than others. Some things aren’t what I wanted to learn, but needed to – like how to tell someone to get the hell away from my kid, nicely. 🙂 Or to make a professional pay attention in meetings. Not skills I wanted, really, but definitely ones an autism parent needs.

I laughed at the person who called me an expert. I know it was meant as a compliment, but I am not an expert.

People with autism are like snowflakes. No two are ever alike, but they are all beautiful.

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Autism and Big Steps Forward

Autism and Keeping Hope Alive

I have heard from other parents that Casey and Rob aren’t like their children and they don’t believe their child will ever do the things my kids are doing. First of all – they won’t if you keep that attitude! Your child “senses” you more than you know and if you don’t think they can do something, they may feel like there is little reason to try.

There are plenty of things that I’m not sure Casey or Rob will ever do – but they don’t know that. If they want to try something, I’ll be right there trying to figure out the safest way for them to do what they want. I’m not sure driving is in their future (Casey won’t even attempt the lawn mower. Rob will… but… let’s say he doesn’t always pay attention so someone is right beside him to correct turns! 🙂 ). I don’t see living on their own right now, either, but I never dreamed we would be taking shopping trips or vacations, either, and we do that.

Earlier this week, Rob brushed his teeth on his own! I am usually telling him “brush here, brush there – you aren’t done, yet, but he did it! I never dreamed they would both handle the drastic change in routine when COVID hit, but they did. I never thought Casey would participate in her high school graduation – sitting with 200 graduates, by herself and walking to the stage and back to her chair. I never thought Rob would want to try new foods or wear new shirts. The list goes on and on of “I never thought…” but they are doing things now!

But – to some people, our successes may seem too simple. Maybe we are just lucky or I have a million dollars for therapies and support staff (don’t I wish! 🙂 ). So I thought I would share a few stories from other families who also “never thought” or were told something would “never” happen. To give more people hope that their child will always be making progress, no matter how slow! Remember, small steps are still progress!

I got a message from my friend “K” the other night that her 11 year old daughter has started using the potty! She even decided on her own!

How about “B”? He has a girlfriend and drives and is hoping to find another job when the pandemic eases up.

“T” loves hanging out with friends and will go back to his job when the crisis lets up, too.

“R” no longer has violent outbursts. His parents are able to help him calm down before he gets too upset.

How about “A”? She can finally be in the same room with her brother. For years, his noise caused her such pain that she physically attacked him. Their parents were on the verge of separating so there were two houses for the kids, when “A” learned to handle being near her brother.

What about “R”? He used to be a runner with no sense of safety. He can now walk around town by himself and has a job that he loves in a school.

I also know a few that are in college – some on their own, some with supports.

I’ve known some of these young people since they were toddlers and I’ll admit – I had thoughts about what each would be able to do as an adult. And they have proved me wrong – happily.

Please – when you have bad days with autism (and we all do – don’t buy anyone’s line that autism is always easy!) talk to someone without your child hearing. You never want your child to hear that you have any doubts about how amazing they are! Vent to someone and then go right back to loving and supporting your child.

Keep your hope alive. It isn’t easy – I’ll be the first to admit I had days when I doubted we would make it through the next day without my losing my mind. When those times happen, stop thinking about the future. Think about your next breath. Think about a glass of wine or a piece of chocolate. Think about anything that will help you calm down. Days do get better. Life does get easier.

Keep on hoping! Keep dreaming! Keep your faith!

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Autism and This too Shall Pass

Autism and This Too Shall Pass

I just saw a meme that said “And this too will pass. It may pass like a kidney stone, but it will pass” and I laughed way too much at that. Cause that is life with autism at times! Casey and Rob have each had habits that I thought would drive me battier than I am at times. Those “quirks” lasted for weeks…months.. even years – till, all of a sudden, they were gone. Rob is in the middle of a quirk now that I seriously will not miss!

It started out that he just needed to say the whole phrase (it takes about three minutes to get through it all) when he was getting ready to leave in the morning. He lists fast food (he always starts with fish sandwich, McDonald’s, coca cola and progresses from there.) and restaurants. He isn’t loud when he does it. BUT – he ends with yelling “COFFEE CUP!” at the top of his lungs. KFC, Tim Horton’s (Chocolate cake yummy melt) and then coffee cup!

Yeah – it’s funny as heck. I know it is. Until – you are trying to get out of the house in the morning and he can’t put shoes or socks on while he is talking and he can’t be rushed and he won’t change and say coffee cup to end it. Or – and this has been yesterday and today – he says it all day. It hasn’t been constant – but it’s been often. And my teeth are clinching every time I hear him say “fish sandwich” until I hear the yell of coffee cup.

And then I saw the meme and I had to laugh. It’s so true. The odd little quirks that people with autism need to live with can get old quickly, but we can’t do anything but wait for them to decide not to do it anymore.

For a long time, Rob had trouble sleeping. For there to be any chance of sleep, he had to have the TV on (volume off), a night light, a fan, certain blankets and stuffed animals, a light on in the kitchen (I once changed that lightbulb at 3 in the morning!) and his CD player with a song on repeat. If anyone cares to know, I figured it out once. The song was three and a half minutes long – say four minutes with the slight break before it repeated. It played roughly 150 times every night. I tried shutting it off once he was asleep (how stupid was that?!?!). It got to the point I didn’t even hear it anymore – until one night, it wasn’t on. And he was asleep.

I thought the CD had finally died, but no. He just didn’t turn it on and he has never listened to it again. The TV is off (he refuses to let anyone turn it on at all now – God knows why!). He doesn’t care about the kitchen light or stuffed animals. He wants his nightlight and a fan. I had a hard time sleeping without the music for a few nights. 🙂

Casey insisted on doing a rather complicated set of hops, jumps and steps as she went into every door. Which isn’t a problem, really, unless a few of those steps involve jumping back out the door. She shocked many people who never dreamed she would jump back on them as they followed too closely. I learned to walk behind her so she didn’t land on some poor old person and knock them over. She couldn’t be rushed – steps couldn’t be forgotten. I don’t know when it became a quick hop in with a little kick of the other foot, but I don’t miss it. It just stopped one day.

Honestly, the only “quirk” I ever broke for them was Casey wearing gloves. She was 5 or 6 and decided that spring that since she wore gloves all winter, she wouldn’t stop. It was cute for a while. Then it was a pain in the butt, as she would lay the gloves down and not put them away. Soon, a glove came up missing. We were going to my parent’s house and she refused to leave. Mandy and Rob were already in their car seats when she hit the floor screaming and kicking because she couldn’t find her glove. I scooped her up, buckled her in her seat and listened to her scream bloody murder all the way to their house.

As soon as we got home, I searched for the darn glove so we wouldn’t have a repeat (by then it was close to June!). She never asked for it again and the next spring, she stopped wearing gloves when it got warm.

Rob’s “Long Black Train” has been around for years. It used to be his storm song, but now he has to say it – loudly – 13 times when we get in the car to come home. Once in a while, he’ll say it to sing himself to sleep. I won’t miss that when he decides he’s done with it. And I won’t miss him yelling coffee cup!

I don’t miss the impossibly strict routines we had to follow for years (we still have routines, but Casey and Rob are both more flexible about things. Unless there is a full moon, it’s windy, the weather is changing or they are hungry or tired). 🙂 I don’t miss the screams if she didn’t get a picture frame at the store. Sometimes, though, I do miss all three of them as little kids. Despite the hell of autism some days, we had fun together.

So – as you listen to whatever “song” your child needs to hear or say for the thousandth time today or drive the exact same way to school or fix foods the exact same way, just remember – this too shall pass.

Like a kidney stone.

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Autism and “Kick in the Gut” Moments

Autism and Kick in the Gut Moments

It’s going to happen. As a parent, there will be times that a thought crosses your mind and you feel as if someone kicked you in the gut. The thought takes your breath away – you can’t get it out of your mind. It might be that your child is leaving for college or getting married. But, when you are an autism parent, those kick in the gut moments come out of the blue – and they hurt.

I had one of these moments yesterday and had a good cry. I don’t want to get into a lot of details (though maybe I should so people will understand their actions hurt). I was reminded again that people are scared of Rob. I get it – he’s tall and he’s big. But, he’s also a huge teddy bear and as mellow as anyone can be. I’m assuming that’s why he scares people. But – it hurts this momma to hear it.

I just want people to give him a chance. He gets anxious and it is assumed he doesn’t like someone or something. Just give him a chance to explore the new place or to get to know you. Honestly, it won’t take him long to know whether he wants to be around you. Casey and Rob both sense the “true” person that we often try to keep hidden. If Rob doesn’t like you, he will just act as if you don’t exist. He won’t attack. He won’t hurt you. Give him time to show you how awesome and amazing he truly is. Please.

Honestly, Casey is more likely to get upset than Rob. She doesn’t get upset often, but when she does, the whole neighborhood knows it. And she doesn’t care if she is at home or in a store – when she is mad, she lets everyone know. But because many of the staff at their day hab are new, they haven’t seen this side of Casey – they have only seen the sweet, beautiful smile and the young lady who loves to go anywhere and try anything. They have seen Rob anxious, though, and that’s what they remember.

Many autism parents have come to terms with the fact their child may never get married or have children. They may understand that holding a job might be difficult. They know their child may live with them forever. The thing is – even if their young person has a job and gets married, there are still mean people in the world who can hurt someone without thinking twice and the autism parent feels another kick in the gut. Their child may want a friend – or to be invited to a party – or a job – or a place to live on their own. After all, their older siblings have all of those things – why can’t they? And those questions will bring on the tears again. No matter how many times you think you are done crying, something will happen and bring on the tears.

Maybe the fact that I have a hard time letting new people around Casey and Rob is part of the problem. I just don’t trust easily – no parent with a child who can’t communicate does, in my experience. I want them to meet new people – I just want to meet these people first.

I know that I’m luckier than many autism parents. Casey and Rob are happy with their lives and don’t seem to think too much about Mandy getting married or having her own house. They don’t seem to think about not having a huge group of friends their age. They are happy with their Elmos and signs and socks and cards. They are happy that they get to spend time with Mandy and Cory, Grandma and Grandpa and Tracie and several others.

I feel for the parents who have children with autism who can communicate – who know they are different and don’t like it. It has to be devastating to try to explain to your child that other people won’t be their friend because of autism. Or that they can’t have the job they want because that employer won’t give them a chance. Or that it isn’t safe for them to live on their own.

I know there are more kick in the gut moments in our future. Every life has those moments. I just wish those moments didn’t come because someone wouldn’t give Casey or Rob a chance to show how awesome they are. That is the hardest thing for me – knowing someone only sees “autism” when they look at Casey and Rob and not the amazing individual who just happens to see the world in a different way.

Get to know them. Please.

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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.

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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 Autism Families Need a “Village”

Why Autism Families Need a Village

I’m sure you have heard the phrase “It takes a village to raise a child.”  This is even more true when you have a child with autism or any special need.  Villages are hard to find when people are intimidated or scared of your child, of your life.  Add to that the fact that trusting people around your child is so hard and families like ours often feel alone and isolated.

I don’t purposely limit our “village” but I also don’t let people in easily.  Casey and Rob (and Mandy and I!) have been hurt too often.  Even when I know someone would never hurt them, it’s still hard to let people see our “real” lives.  Reading about it here is one thing.  To actually be in it?  That’s a whole different ballgame. Maybe I just don’t want to see the look on their face when Rob starts getting loud or Casey gets upset over some little detail.

It’s easier to keep us closed off.

It’s not better for us – I do know that.  I know they need to try new things and meet new people.  I know that the best way to spread autism awareness is to be out in the community and let people see the real us.  But – it’s hard.

Last week, I was shown, again, that being open to new “villagers” can be amazing.  I have known Susie and Gene for years and years – even before Susie moved next door to us.  Since our houses are close, I know she has heard my circus – the yells and meltdowns and everything else.  But – I don’t have to see her hear it, if that makes sense.  I don’t have to see the look on her face. I can just apologize later.

So, they aren’t strangers, but it was still hard to think about spending an afternoon at a lake with them.  Susie and Gene have a boat and an inflatable ride-on to pull behind it.  I wanted the kids to have something new and exciting this summer, since we had to cancel so many things.

But….  What if Rob started his anxiety song?  What if Casey got upset?  I didn’t want to ruin their afternoon.  I was excited to go, but at the same time, I thought about canceling several times.

I worried for nothing.  Casey and Rob loved it!   When it took Casey several tries to be brave enough to step onto the inflatable, it was no big deal.  They were patient and kind.  When Rob tossed a towel (and later, a bucket) overboard, they laughed and said it was no big deal.  I was embarassed and was ready to just go home.  (Actually, had we not been in the middle of the lake, I probably would have!)

The afternoon was amazing. Not only because it was a beautiful day to be on the lake, but because I could relax and let the kids be who they are without worrying. I’m not sure Susie and Gene really understand what they did for us that day. It is more than just taking us to the lake. It was acceptance and caring. As you know, that doesn’t happen often! Our “village” grew that day.

Autism families need support and it’s hard to find. Yes, we need doctors, therapists, teachers – but we need friends just as much, if not more. We need those people who happily invite our family to their events and assure us everyone is welcome.

We need the far away friends who text, just to say hi and make us laugh. We need friends who aren’t autism parents to include us and cheer with us when our kids reach a milestone. We need shoulders to cry on and friends to lean on when life just gets too tough.

We need the support of our families (so many don’t have this and it’s so sad!). We need staff we can trust who love our kids. We need people to understand why we turn down invitations, sometimes, but who will still invite us. We need acceptance.

We need our village. And we need to let more people into our village – to love us and our kids.