Category: autism parenting

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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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Why I Write this Blog

Why I Write this Blog

I’ll be honest. I’m not feeling particularly inspired today about writing. Nothing terrible has happened – I just couldn’t think what I wanted to write or if it even mattered if I skipped a week.

Then I thought about taking Blue (my dog) to the playground the other day. It’s completely covered in snow and we were the only ones there. She ran and sniffed while I sat and watched her.

As I was sitting there, I noticed a sign stating the playground was only for those under 12 and remembered the stares we got when Casey wanted to play on the playground a few years ago.

It is a huge wooden structure and is plenty big enough for adults. I’ve been through most of it so there’s no danger of Casey or Rob breaking something. But, as Rob was swinging and Casey exploring, I saw the stares. I heard the comments. One person pointedly read the sign a little louder than necessary. I ignored her, but most of me wanted to say, “You are obviously well over 12 – why are you playing on it?”

I didn’t, though. I watched Casey and Rob to be sure they weren’t bumping into little kids. And noticed they were the only ones being careful (though I’m sure most of that was due to them not liking strangers! 😊). Other kids were knocking each other down and not paying any attention to the smaller kids.

But – we got watched closely. We got the comments. We got stared at.

Because we were different.

And that’s why I write this blog.

So maybe the next time a family goes to a playground, they can just sit and enjoy it.

Maybe the next time a family is having dinner out and someone is flapping their hands with excitement, no one will stare.

Or if someone is sitting at the table with headphones to block the noise, they won’t hear comments.

Or if an adult gets overly excited about buying a new Elmo, no one will care – they will just enjoy her beautiful smile.

Or if another someone yells power ranger names when he sees colors together (party aisles are so tempting – everything neatly organized by color! 😊), other customers won’t blink an eye.

I do this so other parents don’t feel alone when they are tired, frustrated, scared and alone. I’ve been there – it’s a terrible feeling. Hopefully, some day, no parent – typical or special needs – feels like no one understands their life.

I do it to share hope – to show things do get better.

And, of course, I do it to share laughter, because autism can be hilarious at times. I have to laugh – it keeps me young! (Not that I haven’t cried, too, but laughter is so much better!)

So – share this blog wherever you can. Help me show the world how awesome autism can be. Help me bring more awareness and acceptance. Help me bring hope to exhausted families.

People with autism are incredible and the world needs to know 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 a Sense of Humor

Autism and a Sense of Humor

One of the most common misconceptions of autism is that people with autism don’t understand humor and don’t have a sense of humor. Casey and Rob are constant reminders of how wrong that is.

Last week, Casey went shopping with her friend, Julie. Julie hasn’t been with Casey for very long and wasn’t aware that neither Casey or Rob are allowed to have gum. I have nothing against gum, but they have never understood that you just chew it and then throw it away. It’s an odd concept and I gave up trying. We just avoid it.

Casey is well aware of what she is allowed to have and what she isn’t. She bought a bag of gumballs and proceeded to eat it – all while ignoring Julie’s reminders that you don’t swallow gum. When they came home, Julie was worried. Casey, however… she was grinning ear to ear under her mask and her eyes were just twinkling with mischief. She knew exactly what she was doing. I took the rest of the gum and told her not to buy it again.

She laughed and ran to her room to color. While we were visiting my parents, I asked Casey what she was going to buy with Julie the next day. She giggled until she was shaking as she told me she was buying gum again. 🙂 (She didn’t – but I’m sure she tried. Julie was on to her tricks!)

Meanwhile, Rob was in the store with Bob. He knew he was allowed to buy four things and carefully picked out two packs of cards and was done. But, when they went to check out, he picked up five packs of cards. Bob reminded him he could only have four things (we are constantly working with them to understand money) so Rob put all of them back and went into another checkout aisle to grab cards there. Bob told him he could only have four things and that it didn’t matter which check out aisle he chose.

So Rob stood with seven packs of cards and waited for Bob to decide he was cute enough to deserve everything he wanted. I’m sure he was grinning under his mask. 🙂 He did finally put the cards away and came home. After I heard the story, I asked him about the cards. He laughed and laughed. Again, he knew exactly what he was doing.

They don’t have Hopewell tomorrow, but Bob and Ginny are coming to take them for a few hours. Rob has aquatic therapy, which he loves. Rob asked about Hopewell Monday. I told him it was closed, but that Bob was coming. He was happy – until his grinning sister said “No Hopewell Monday.”

He started to get anxious. I told him again Bob was coming and he could go see Erin. He relaxed – and she said again, “no Hopewell” He started rocking and humming and she just grinned and giggled. So, she was invited to leave the room while I assured him that he was going to see Bob and Erin tomorrow. She laughed all the way to her room.

But don’t think she is the only one who picks. He is just as likely to mess with her. If she is trying to reach something, he will “help” by getting it for her – and then holding it above his head so she still can’t get to it. He laughs – she gets frustrated.

I think some of the assumption that they don’t have a sense of humor comes from the lack of understanding verbal jokes. They take everything they hear so literally that understanding a pun is nearly impossible. However, they both love physical comedy – think Home Alone, the Three Stooges or Tom and Jerry cartoons.

While it is wonderful to see their eyes twinkling as they play “tricks” on people or hear their giggles, having a sense of humor is definitely something you will need, too. There will be days that they only way to get through them is to laugh. Seriously, no one will believe the circus that happens in your home and you might as well laugh about it. I have to laugh about the floor tapping and the light switch tapping and the shower curtain in just the right place and lunch boxes packed with exactly the right items… and the list goes on. Truly, I do know how funny my life sounds. And I would much rather laugh than cry about the crazy little things we live with.

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Autism and Advice Every Parent Needs to Hear

Autism and Advice Every Parent Needs to Hear

So, last week, I shared with you the hardest thing I had to admit – that sometimes, when Casey and Rob were little, autism embarrassed me. I was surprised by the response to that post – how many people thanked me for sharing that. I’m sure everyone feels that way at one point or another, but are too ashamed to admit it. After all, we aren’t supposed to say things like that.

Well, here’s another confession (and one I just talked about with my friend, Joy, yesterday)… autism sucks sometimes. There. I’ve said it before and I’ll keep saying it. There are times when it just sucks.

Does this mean that I’m not incredibly proud of Casey and Rob? No. It means, sometimes, I’m tired and I don’t want to hear someone yelling “Long Black Train” in my ear all the way home. I’ve yet to figure it out, but that’s Rob’s transition phrase from somewhere to home. He has to say it a certain number of times (Honestly, I’ve never counted – maybe I should!) when we get in the car to go home. He never says it in anyone else’s car, but instead starts as soon as they pull in our driveway. Some days, I don’t even notice it. Other days, I have a death grip on the steering wheel so I don’t yell “STOP!” at him.

It means I’m tired of her insisting that she can’t eat leftovers. I’m tired of trying to guess what’s going on when I know they don’t feel good. (She is asleep on the couch now, but I’m fairly certain it’s a sinus issue, but she can’t tell me.) I get tired of the list of fast food places that ends with him yelling coffee cup. (I still can’t figure that out – I don’t drink coffee and don’t use coffee cups – always something different and exciting here. Sorry to our neighbors who sometimes get to hear the yell at 8 in the morning. 🙁 )

I think the hardest part, though, is the stigma that you feel when you admit that autism sucks some days. The terrible guilt you feel. The worry that people will think you mean your kids are a terrible burden that you don’t want anymore, when in reality, all you mean is that you are just too darn tired to think anymore.

It means that autism in the family can be stressful – certain foods to eat, certain routines to follow, certain clothes to wear. For some families, the inability to have a conversation with your children. Casey and Rob are able to answer simple questions and will usually tell me what they need or want, but I can’t ask them what they think about a certain song or movie. I can’t ask what they did at Hopewell that day. I can’t ask if they are happy or what their dreams are. I, like most other autism parents, go with my gut on most things and hope I’m right or close to it.

The weeks that Rob didn’t feel well last month are a perfect example. He had no fever, no cough, was eating like usual…. but he was sleeping 18-20 hours a day. I kept asking if he needed the doctor and he told me no. I asked if his ear hurt – no, itches. Throat? itches. Finally, after a week, I took him to the doctor only to hear Rob was right – no ear infection, no strep. He had a virus (not COVID). Had he been able to communicate more, we might have figured that out on our own. I hate it when autism makes me worry even more about Casey and Rob.

I’m not sure why it seems special needs parents are held to a different standard when talking about their children. Maybe it’s not true, but it does appear that we get handed a lot more guilt about being tired and stressed – when we have more reason than others to be tired. Being a parent is tough some days – everyone should be able to admit it and not feel guilty. It’s normal.

If you need a shoulder to cry on or an ear to vent to, message me. I promise – I won’t judge you for your feelings. Let go of the guilt, the embarrassment and go on being the amazing parents I know you are. Stay tough – but cry when you need to. Admit when you need help. Those of us who are parents to adults with autism have been in your shoes. You will get through the tough days. Practice saying “autism sucks sometimes” – just don’t settle in those sucky days because autism is also amazing and beautiful and special. Good days and bad days – just a typical life, with some added excitement. 🙂

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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 my Christmas Wish for You

Autism and My Christmas Wish for You

With less than a week to go before Christmas, Casey is getting more excited every day. She reminds me every morning that Santa is coming soon and that she is hoping for a new Elmo. Rob just grins at her, but he never mentions Santa unless I ask him what he wants for Christmas – then he says “Santa.” It took years for us to get to this point and I plan to enjoy every single moment.

My wishes for you are the same as the ones I want. Simple ones, really.

  1. I wish for excitement on Christmas morning, whether it is squeals of joy, flapping hands, or beautiful twinkles of their eyes. Honestly, there won’t be any of that at our house. Casey will be in full-on holiday mode and until everything has happened that she expects for that day, she is unable to fully relax. But, I will catch a small grin as she opens a new Elmo or a whole book of color by number pictures. Rob won’t say a word, either. But, he will carefully peel of the plastic wrap on his new signs and hold them in his lap as he opens other gifts.
  2. I wish for a meal of laughs and fun. I don’t know what a quiet meal is – and imagine quiet dinners would be quite boring, unless you were having a romantic date with your significant other. I wish for food that Rob will enjoy ( he loves ham!) and disposable plates. I wish for my family to be together and for the laughs (and once in a while, a roll or carrot!) to fly!
  3. I wish for tons of pictures to capture each moment – even the “boring” ones.
  4. I wish for an anxiety free day – whatever that looks like for you. For us, that means Casey and Rob have plenty of downtime at home between their dad’s house and my parents’ house. They get to relax and unwind.
  5. I wish for health for everyone. This year, especially, things might look a little different for you. We have small family dinners each year, so that’s our plan for this year. I hope between now and Friday, no one is sick or quarantined.
  6. Most of all, I wish for you – peace, acceptance and love. None of this may look like you once thought, but that doesn’t mean it still isn’t perfect for you.

Merry Christmas to each of you! Be happy, be safe and remember the reason for the season.

With hugs and love,
Jen

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Autism and a Christmas Party

Autism and a Christmas Party

This post is going to be a little different, as usually I’m talking to families or professionals that are with people with special needs every day. This post is for those who have little to no experience with people with autism. Please – print and share this with anyone you may encounter this holiday season!

While Christmas is a very magical time for most people, for those with autism, it can be even more difficult to handle the day to day stress and anxiety. Unlike what many people believe, people with autism do enjoy the holidays – on their terms. They may not be able to tell you what they want for Christmas or tell you what they would like to do, but they want to be a part of the excitement, too. Again, on their terms.

Some may enjoy a huge, loud party with all kinds of food and plenty of people to talk to. Casey and Rob would hate that. They much prefer small gatherings with people they know and are comfortable with. My point is – just because my kids would hate it, doesn’t mean their friend Brandon would. Tyler and Adam like to be the life of the party, while Riley prefers smaller groups. There is no one size fits all – but, please… invite us. We don’t want to be ignored. We may not be able to come or stay long, but you have no idea how happy we are just to be included.

Going to stores can be especially tough during this time of year. The stores are crowded – things are moved around – the music is loud. Sensory issues can can an overload and a meltdown. We don’t need your laughs or your negative comments. Either be kind or get away from us. Trust me – nothing you say will surprise us autism parents. We’ve heard it all. Just remember – our patience is saved for our children, not for you.

Excitement may be hard for people with autism to handle. They may rock or hum or flap their hands or squeal. Be happy and enjoy their excitement – you don’t need to be concerned. Anxiety may be higher and cause more calming behaviors, such as rocking or squeezing their hands or cheeks (Rob used to squeeze his chin as hard as he could when he got anxious. Now he flips at his ears.) Again, you don’t need to worry. Ask if they need help, if you can be kind.

Be understanding if we come to your party and bring our own food. Casey will eat almost anything. Rob won’t. Riley won’t. Tyler and Brandon aren’t as picky. Adam only likes certain things. We aren’t saying we don’t like your food choices by bringing our own food. We are simply hoping that if our children have what they need, we might be able to enjoy your food and a few minutes to eat it.

And – understand if we come to your party looking like we are moving in. We may have a favorite blanket or stuffed animal, an iPad, coloring books, headphones – you name it and we may be packing it. We are not spoiling our kids – we just want them to enjoy themselves in the hopes that we can have fun, too. If you have a spare room that we could use as a quiet space, that would be amazing.

And, please, please, understand that many of our kids believe in Santa forever. Don’t spoil that magic for them. Casey believes in Santa and the Easter Bunny. Rob will talk about both, but whether he truly believes in them or goes along for Casey’s sake, I don’t know.

On last thing – we know our lives can be confusing to those who don’t live them. If you have a question or concern, please ask us. It may be hard to talk about at times, but we would much rather be asked questions than to be ignored. Learn more about autism. Discover how amazing people with autism are. Accept us and you will find the most wonderful love and joy.