Category: autism acceptance

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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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“Do Your Kids with Autism Talk?”

Do Your Kids with Autism Talk?

Most of the time, when someone learns Casey and Rob have autism, this is one of the first questions I am asked and when I say, yes, they can talk, I am told how lucky I am. I’m not denying that I am extremely lucky, but…. talking and communicating are too vastly different things.

Right now, Rob is talking in his room. Long black train, Grandpa Bill, Christmas trees, and tomorrow’s Hopewell. Casey is laying on the couch giggling about Elmo learning his ABC’s. Yes, Casey and Rob can talk – for hours, loudly, but, they have a difficult time communicating with me.

They can answer simple questions, most of the time. “What did you eat?” “What do you want to eat?” “What store do you want to go to?” “Do you want….?” Easy, short questions that have literal answers.

But, communicating, that’s another story. I have several examples of what I mean.

Next week is Rob’s birthday. I have asked him several times what he would like for his birthday. “Presents.” I asked what kind of presents. “Presents.” He doesn’t understand that I’m asking what he wants inside the wrapping paper, even when I change the way I word my question.

Friday, when I dropped them off at Hopewell, Casey couldn’t get her door open. She was in the backseat and the child lock option was on. Rob flipped the switch and got out. She couldn’t tell me she needed help and since I was watching to be sure he walked straight around the car to the sidewalk, I had started pulling away before I noticed she was still in the car. (Mother of the Year minute, right there! 🙂 ) She simply didn’t know she could say “stop!” or “help!” Other times, she can ask for help – but it’s not a consistent habit.

Their iPads updated one night. Casey asked for help the next day. Since the iPads rarely update at the same time, I didn’t think to check his. Instead of coming to me, he just laid it on his bed and found other ways to occupy himself. (He doesn’t usually spend as much time on the iPad as she does – he has several other things he likes to do.) But, still – he didn’t know how to ask for help, even though, most of the time, he can. His headphones stopped working and again, instead of telling me, he found an older, small pair and used them.

A few years ago, we drove to a place about an hour from home to look at Christmas lights. On the way home, he started saying his anxiety phrase – loudly. Mandy and Cory were with us and even they couldn’t calm him down. When we got home, he ran to the bathroom. Since we were in the car, he didn’t know he could still say he needed to use the bathroom and we would find a place to stop.

It’s little things like these that show how much their communication skills are affected by their autism. Yes, they talk – most days until it’s just a long, loud blur in my ears. But, they don’t really communicate with me. I can’t ask them what they did during the day. I can’t ask what their favorite color is or what movie is their favorite. I can’t know for sure what gifts Rob would like. I can’t know for sure when they are feeling sad or sick or tired. My life is a series of best guesses. Most of the time, yes, I get it right. (After all, I’ve lived with them for 33 and almost 29 years! 🙂 ) But, I would so love to have a real conversation.

What do they think about having a nephew in December? Where would they like to visit? Does anyone scare them? Or bother them when they aren’t with me? (that’s a huge fear – it can take weeks for Casey to say anything and it’s like pulling teeth to get info from her. Rob won’t say anything at all.)

So, yes, I am very grateful that Casey and Rob can talk. I love that I can get some answers from them. I am one of the lucky parents and I thank God for that every day. But, please remember that the ability to talk does not mean someone can communicate their needs, wants and fears. That takes patience and years of being around someone to understand. Learn to read your child’s eyes. The eyes truly are the windows to the soul – you will see how much they love you in their eyes, when you learn to look instead of listen.

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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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Think Autism Cans Instead of Can’ts

Think Autism Cans Instead of Can’ts

Have you ever noticed how people (and I do it, too, at times) always think about what they can’t do or have instead of focusing on what they do have? And when we have children with autism that becomes an even bigger issue.

Parents compare their children to other children. My child can’t talk. My child can’t eat many things. My child can’t tie his shoes. My child can’t ride a bike. My child can’t write neatly. Can’t… can’t… can’t. And even worse, the child may hear all of this negativity – how would that make you feel if you heard every thing you can’t do listed for anyone who would listen?

Jen can’t sing. She can’t (actually, it’s more like won’t 🙂 ) cook fabulous meals. She can’t change a tire (again, more like I won’t! 🙂 ) She can’t fix the car. She is stubborn. She is impatient. She has a temper. Blah Blah Blah….

I can write all of that and not care, but if I overheard someone saying negative things about me, it would hurt. (Unless, of course, it was someone whose opinion didn’t matter to me 🙂 ) Imagine hearing things about yourself – and not being able to defend yourself or tell anyone that the words hurt. Now imagine you are a child who can’t.

And this is why we have to focus on what our kids can do and not what they can’t! And we have to be careful how we talk around them. They are always listening, even if it seems like they aren’t. (I’ve learned that the hard way – never try to plan surprises with Casey or Rob in the house – I don’t care what room they are in!)

Rob can’t tie his shoes. But he can get clothes from the dryer. He can bring the trashcan back from the street (honestly, it wasn’t too long ago that I couldn’t let him get that close to the street as he would dart away!). He can fold his clothes and he can design the most amazing things with his Legos.

Casey can’t wash her hair. But she folds laundry. She draws beautiful pictures. She sings like an angel. She can sit on the patio by herself. (again, when she was little, I didn’t dare let her out of my sight, let alone in the yard by herself!)

Besides, when you only focus on what is missing, you don’t see the positives. You drag yourself down into a hole – and take your child with you. Trust me – I know there are many days that finding something positive is as hard as finding a needle in a haystack. There will always be days like that – just don’t let yourself think only of negative. Remember that better days are always coming. (I sound like a Hallmark movie, don’t I? 🙂 )

I think every meeting about our kids should start with a list of the amazing things they can do before getting into the negative stuff. I was lucky that most of the teachers my kids had did this and it really helped me to hear that not everything was going badly. It helped me to hear that the teachers were proud of the progress, no matter how little, they had made. For every teacher reading this – please, take a few minutes and do this in IEP meetings. Help the parents remember how special their child is – they are already well aware of their child’s deficits.

Focus on every small step forward – every “can”… every time your child tries a new food – or just looks at it. When your child can put his shoes on – even if they are on the wrong feet – it’s progress! When your child can sign “yes” even if verbally, it’s still difficult. When your child calms down before a full blown meltdown. When your child can sit in a loud restaurant for a few minutes. It’s all steps forward to a future no one can predict. Celebrate every step!

Who would have thought that the child who put her head through three windows during meltdowns would be almost off her meds now? Who would have thought that the child who refused to even look at new foods is now willing to try them? Who would have thought that the child who screamed in pain at many sounds now only rarely puts her finger in her ear to block out noise? Who would have thought that the child who constantly darted away would ever walk in stores by himself?

Small steps forward and lots of “look at what they can do!” thinking. Sure, I have times that “can’ts” are in my head, but usually, I’m tired or stressed about something else and the last thing I feel like dealing with is autism. It took a long time for me to stop focusing on the can’t and start looking at the can. You can do it, too!

Because if we don’t have faith and hope for our children, who will?

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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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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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30+ Years of Autism and I’m Still Learning

30 + Years of Autism & I’m Still Learning

For more than 30 years, autism has been front and center in our lives. I find it hilarious that some people believe that makes me an “expert.” For one, neither of my kids are alike and another… No one is an autism expert. There are many people with a vast knowledge of autism – and you are the best expert about your child! Never doubt that!

A few weeks ago, the kids and I went on a boat with friends. Casey was scared to get on the inflatable that is pulled behind the boat, but with encouragement, she finally tried. Rob wouldn’t even attempt it and I was so surprised, as I thought he would be the one to jump on without a thought. After Casey rode, I tried and tried to get him to at least walk back and look at it, but he wouldn’t. Finally, I said, “Just take your shoes off and try, buddy!” and he kicked his shoes off, stuffed his socks in his shoes and was ready to get on!

What the heck? Then it dawned on me – he never, ever gets his shoes wet. When we go kayaking, he steps into the kayak without getting in the water. When we go wading, he always takes his shoes off. And he wasn’t able to tell me that’s why he didn’t want to do it – he didn’t realize he could take his shoes off. Casey and I were barefoot, but we were wearing flip flops – he didn’t understand that it was okay for him to take his shoes off and he wasn’t able to tell me that’s why he wouldn’t get on. I simply never thought about it.

Last week, I went into Casey’s room to pull her sheets off of her bed and stepped in water! Her AC had been leaking, but she didn’t see any reason to tell me. Her carpet was soaked and she had to have stepped in it to turn the AC on and off. But, thanks to autism, she didn’t even think about telling me. I forget so often that things that are important to me (like water in the carpet!) mean nothing to them. She wasn’t able to tell me or even think that it was something that I might need to know. Thankfully, the carpet dried faster than I thought and I reminded her several times that she needed to tell me when things weren’t right. (She can certainly let me know when her iPad isn’t working!)

Rob had a problem the other day and he was acting completely out of character. If I was an autism expert, I would have stopped and tried longer to find out what was going on, but as a frustrated parent, I didn’t handle it as well as I should have. When I finally had all of the facts from the situation, I apologized to him several times. I’ll admit – as much as I try to think about every possible trigger when things happen, some times, I’m tired and that doesn’t happen.

Every day, Casey and Rob prove to me that as well as I know them, autism is an ever-changing disability that will never be fully understood by me – maybe even not by them. I don’t think they always know why they do the things they do, but only that they need to do it. Their OCD causes both of them to have rituals to feel safer – she needs to jump into doors and tap things three times. He has to have all of the windows open – except the one in the craft room always has to be closed – or all of them closed and locked. I don’t understand why, but it’s really not a big deal and helps him feel better.

I don’t know why both of them are hypo-sensitive to touch, but he can’t wear certain clothes. To my way of thinking, if your skin isn’t sensitive enough to notice a cut or burn, why can it feel the differences in shirts? He will burn himself in the shower if he turns the water on himself because he doesn’t notice the how hot the water is – but he can’t wear long sleeves because they hurt? I just don’t get it.

I don’t know why some nights, he can go to sleep easily and other nights, he is up most of the night. Usually, if she has a sleepless night, I can pinpoint why, but not him. Water is soothing to him while she barely notices it. Just like everyone else, they have their own preferences and we have to learn to separate what is “autism” related and what is just their personalities. It’s not always easy, either. Every day, I learn more about Casey and Rob.

We have rough days – days that I think autism just plain sucks. Days that I’m so tired I can’t think straight, let alone try to figure out why they do things they do. There are days that I let chores slip and that I don’t think about the future. Let yourself have those days, too. You can’t be “on” all of the time. You will exhaust yourself – and who will take care of your child, then?

Never doubt you are the expert on your child. Doctors and others may know a lot about autism, but no one knows your child like you do. Just remember – while you are your child’s expert, you will never stop learning about autism. That’s the thing about autism – it seems as soon as you solve one mystery, another one will pop up. It keeps life exciting! (I choose to look at it that way so it doesn’t drive me crazy! 🙂 )

Please, though – share your knowledge and experiences with other autism families. What worked for you may not work for them, but you never know. And maybe only part of your solution will help, but often, just knowing other families have gone through the same things, will help. We will all keep learning together to make the best lives for our families. 🙂