Autism and the Importance of Self-Care

If you’ve ever been on a plane, one of the first things you hear is if the oxygen masks come down, put yours on first – you can’t help anyone if you don’t take care of you. It seems like a reasonable plan. But, would I do that? Put mine on before I helped Casey or Rob? Hmmm…. the only reason I’ll say mine goes on first is that Casey and Rob will never be on a plane. 🙂

Honestly, though, I do have a hard time with the whole self-care thing. I know the last several months, especially, I let go of things that I truly love doing because I never seemed to have time. I was busy with both jobs, with Casey and Rob, with helping Mandy and Cory move… I can make all the excuses I want, but the reality is, I have a terrible time taking time for me.

When school finished for the year, I decided that if I was truly going to live until I’m 120 (my goal so Casey and Rob will be close to 100 and will hopefully never have to live without me 🙂 ), I needed to think of me, too. I still struggle with it, but I’ve been reading every day and exercising more. I’ve started doing Yoga again and am trying to eat healthier. I am working on my crafts again and remembering how much I love creating things. Do I feel guilty about this? Yeah, sometimes.

Sometimes, as I pick up my book, I think I should be sending pitches for more writing jobs. I should be calling this person or that one or knocking a chore off of my to-do list (by the way, do chore lists ever disappear? Every time I think I’m catching up, more stuff gets added! 🙂 ) I beat the guilt back by reminding myself a stressed out person won’t live to be 120.

But – it’s not easy to put yourself first. My kids will always be more important to me and it seems there is always something I can be doing with or for them. I could be swinging with Rob or having an endless conversation with Casey. I could be building with Legos or making color by numbers for Casey. We could be practicing with their communication apps. We could be hiking together. And the list goes on.

I’ve burned out a few times in my life. Luckily for me, I just end up an exhausted, crying mess. I don’t have health issues – just emotional ones, so far. And please God, may that continue. The thing is, I know when I’m getting close to burning out. I know that when I crash, I won’t be any good for Casey and Rob. I know I need to take a break and do something for me. I know all of that – and yet, I still don’t always consider my own needs as being that important.

It’s crazy, isn’t it? To know I’m coming close to a meltdown and just keep running towards it. Do any of you ever do that?

I remember one time several years ago that I completely burned out on a Sunday morning. I couldn’t figure out what we needed to do to get ready for church. Really, I just couldn’t think. Thankfully, Casey and Rob are so routine based that they got themselves ready and we made it to church. I saw my parents and started crying. Big, ugly sobbing …. and I couldn’t stop. Casey and Rob went to their class and I sat in an office with my parents and cried. I was so tired, I could have gone to sleep right there. The sad thing? My parents wanted to take Casey and Rob home with them so I could have a break and I couldn’t agree with it. I just kept saying I was fine and I just wanted to go home.

Even in the middle of a breakdown, I couldn’t just say I needed help. I’m nothing if not stubborn. I finally agreed to go back to their house and take a nap.

Don’t be like that version of me. You won’t get any extra points in life for not accepting help. For not asking for help before you burn out. You know what you will get? Gray hair, ulcers, and an unhappy life. Autism is tough, even on the best of days. Ask for help before you burnout.

Self-care really is that important. If you crash, your child will crash, too. It’s that simple. You won’t get a gold sticker by doing it yourself. I know how full your days are. There is always something else that needs done or someone that needs help. It won’t end. Only your attitude can improve. You have got to take care of you. Consider your self-care as important as your child’s care.

The picture with this post? Yes, those are my feet as I lounged by the pool – all by myself. For the first time since I became “Mommy Jen” I went to a pool by myself. If I can learn self care, you can, too!

Find ways to relax and remember what makes you happy. Don’t make excuses about not having the time. If you don’t make the time to take care of you, you will crash and burn – and you will take your child with you.

Autism and Tough Choices

Autism and Tough Choices

You know that I’m a big supporter of letting people with autism try new things. Whatever Casey and Rob want to try, I do my best to find ways to support and encourage them. However, there are times that I have to make tough choices – and they usually break my heart. I hate mom guilt.

Yesterday was my niece, Anna’s, graduation party. It was held at a place Rob was somewhat familiar with, but there was going to be a big crowd of people he didn’t know. Plus, the weather here has been unstable, to say the least, for the last week. Plus, it was hot and humid. Casey couldn’t wait to go – she had gotten a new shirt, just for the party. I knew Rob would not enjoy himself. I knew it. While I’m all for pushing them to try things, I also don’t set them up to fail. He may have been fine, as I wouldn’t have been there long. But, my gut told me I was asking for trouble. I knew his anxiety would go sky high as soon as he saw so many strangers.

The problem was – he heard Casey talking about Anna and Uncle Jeff and Grandma Rose and Grandpa Mack. So he started asking, too. I tried to explain to him that the party wasn’t at Uncle Jeff’s house or Grandma’s house. But he kept asking. And I felt like crying. I knew he wouldn’t enjoy it – but how could I explain that to him? When I’m always telling them both they can do anything if they would just try?

Enter – Mom Guilt.

Because, the reality is…. I knew it wouldn’t go well. And I just didn’t want to have to handle it.

Not that he would have a meltdown or run away. He would just get loud… louder…. louder…. maybe scream coffee cup or one of his other phrases. I knew Anna would be fine if he did – she’s an amazing young woman. I knew my brother wouldn’t care. But – sometimes… I just don’t want to be put in that position. So, mom guilt set in. I went back and forth arguing with myself.

In the end, I told Rob it was hot and it would be crowded. He asked for Uncle Jeff. I told him he wouldn’t be able to be in the house by himself – he would have to stay outside with me. He asked for Anna. I told him he would have to put a good shirt on. He asked for Grandpa Mack.

I didn’t want him to think I just didn’t want to take him. I’m proud of him! But – I also knew it wasn’t going to be fun for him. This is the hardest part of being an autism mom – the lack of communication. Did he understand that I knew he wouldn’t enjoy it or did he think Casey was more special than he was? So I cried some more.

In the end, I pulled out the big guns. I offered him a deck of cards to rip up and a Big Mac and fries. He stayed home. He was happier there. But I was almost in tears as I pulled out of the driveway. I never want my kids to think they aren’t welcome to go anywhere with me. I wanted him to understand that I knew he wouldn’t enjoy it and that’s why I was making other arrangements for him. But still….. autism isn’t easy.

It was good to see everyone at the party, but I couldn’t really relax. Even though I knew Rob was happily ripping up cards and waiting for his McDonald’s. Casey happily filled her plate with delicious food, watched kids for a few minutes and she was ready to go. We got Rob his supper and went home.

He seemed ok – but it still nags at me. Does he really understand that I would have loved to take him if I thought any part of it would be an enjoyment to him? If it hadn’t been so hot – if the weather didn’t already have him anxious…. the list goes on. The reality is, I know I did the right thing. But it still sucks at times. Mom guilt. Don’t you love it?

And – only another autism parent really gets how hard it is sometimes. People understand it’s hard. The people closest to us understand a little more as I’ve cried on their shoulders. But – really, only another autism parent truly understands that pain of not knowing if their child truly understands you are making a tough choice that is better for them. Communication… you don’t think about it much, until you don’t have it.

So – I still stand by my advice to always let your child try – as long as there is a possibility of success. Yesterday, Rob had too many things stacked against him. He may have made it through the party without any yelling, but he wouldn’t have liked it. He would have been stressed and anxious – and we would have paid the price when we got home.

So – let them try. But follow your gut instincts. And – don’t be afraid to just say your children are staying home because you need a break. It’s allowed. And it’s important.

Why Understanding Sensory Needs is Important

Why Understanding Sensory Needs is Important

Now that we’ve covered all of the senses, I want to talk about why it is so important that you understand how these sensory needs truly affect a person with autism. Every day, our bodies (and brains!) are constantly dealing with noises, tastes, smells, etc. Some days, it’s exhausting – think how tired you might be after being in a noisy room for a long period of time.

Now imagine this. You are in a crowded room with several people wearing different lotions, perfumes or colognes. The lights are flickering (maybe only you notice this!) and your shirt is itchy. One of your socks is slightly twisted, so the seam is across your foot and it hurts. The noise of people who are constantly shifting in their seats or tapping their fingers or swinging their feet is enough to drive you crazy. Then, the fire alarm goes off and the pain from that sound is excruciating. To top it all off – you are hungry and you can’t tell anyone what you need.

How would you react? Would you be able to sit calmly and listen to the teacher read a story? Could you focus on a test where the letters seemed to be dancing on the page? Would you be able to color a picture when you aren’t sure how to hold the crayon because your fine motor skills are so affected by autism?

And this is just a very small thing that people with autism deal with every day. This, on top of the desperate need for routine – the need for things to be in the “right” place – the need for kind people to be around you.

No wonder so many people with autism have meltdowns. (Not tantrums – we’ll talk about the difference in meltdowns and tantrums another day) Their bodies are so overwhelmed by the sights, sounds and smells that are always bombarded them that it’s hard for them to stay calm. Imagine trying to sleep when all you can hear is a faucet dripping or the strong smell of fabric softener?

It took me a long time to truly understand Casey and Rob’s sensory needs. I finally happened to hear about sensory issues at a conference I attended and it was like a slap in the face to me. So many things started to click! How Casey was terrified to be in the bathtub when the water starting draining out. How Rob had to wear the same type of shirt (this was in elementary school – had to be a certain brand from Wal-mart). How he squeezed his jaw when he was getting overwhelmed. How neither could eat in certain restaurants (the noise of the HVAC).

Why stores were so hard for them. Why he refused to eat certain foods and why neither of them could sleep. Why he never noticed things that were hot and why she refused to go in the gym at school.

Once I knew why things were happening, it made a huge difference in our lives. It took a long time (and things change – we are constantly on alert for what may cause either of them pain or discomfort) to really understand that they weren’t just being little turkeys when they avoided something. They were truly in pain. Noises are still hard for both of them. Last night, we went to a parade my niece was in and Casey and Rob both got tense when they saw the fire truck coming. She put her fingers in her ears as soon as she saw it and he followed her lead. (My mom covered his ears for him, too – he loves the trucks, but their air horns are extremely painful to him.)

When you start noticing behaviors with your person with autism, think outside the box. Consider any new laundry soap or shampoo (for them and you!) – anything with a scent that they might find too strong. Think about the lighting in the room – is it flickering? Consider the temperature – you may be comfortable, but they might be too hot or too cold. Really notice the noise level – and remember that the noises may not be ones that you can hear clearly, but the person with autism can. They might be loud noises or very low, like HVAC systems.

The best way to discover what might be going on is to start a journal. When a behavior happens, note where/when/who was around. What clothes they were wearing. The activity they were doing. Do this for a few days and you may see a pattern. Maybe they are frustrated because they can’t hold their pencil. Maybe they are hungry. Maybe the person next to them smells funny (I don’t mean this to be mean – the person may use a different soap or maybe they smell like the French fries they had for lunch. Just because a scent doesn’t bother you, doesn’t mean it won’t bother your child!)

Many behaviors we see with autism could be sensory needs. A child who runs away. A child who won’t eat. A person who can’t sleep. A person who avoids a certain room. It takes a lot of work to discover the reasons behind behaviors if your child can’t tell you. Sometimes, they can – Casey and Rob couldn’t and still won’t. We have just learned what issues they have, avoid as many as possible and are ready to help when sensory needs pose problems.

Please – when your child starts a new behavior, consider sensory needs as a possible cause. Of course, sensory needs won’t always be the cause, but in a majority of cases, I bet they are at least a small part of the problem.

I also bet that you have some sensory needs yourself. I know there are certain materials I won’t wear and scents that make me gag. Think about it – I bet you have learned what bothers you and you just avoid it. But what if the adults around you make you do things or go places that are painful and you can’t tell anyone? It’s meltdown time!

Happy Mother’s Day!

Happy Mother’s Day

Happy Mother’s Day! 💙

To the moms who are still waiting to hear their child say “mommy” and the ones who hear it all day long.

To the moms who fix chicken nuggets or pizza every single day.

To the moms who are still helping their adult children with baths and showers.

To the moms who stay up late to make sure their child gets home safely.

To the moms who function on little to no sleep because their child doesn’t sleep.

To the moms struggling to keep doctors’, therapists’ and teachers’ names straight.

To the moms of escape artists who can open any lock known to man.

To the moms of dare devils who fear nothing.

To the moms who are crying in their pillows at night.

To the moms trying to think of every sensory issue their child has when they dare to leave their home.

To the moms watching their child’s meltdowns, knowing there is nothing they can do but keep them safe.

To the moms who are constantly worried about “when I’m not here, who will love my child?”

To the moms whose child desperately want friends, a job, to drive, to have their own home and don’t understand why they don’t.

To the moms of newly diagnosed children who don’t know what to do first.

To the moms who are tired – the same foods, the same routine, the same clothes, the same… The same… The same…

I know there are times you feel like the world’s worst mom. You forgot this – you are too tired for that – you got irritated at the constant verbal stimming – you can’t find the only brand of chicken nuggets your child will eat.

But – I also know that no matter what, you are awesome and amazing and stronger than you think.

Trust me. I know lots and lots of moms who don’t realize how amazing they are. You are one of them.

So, today is your day! Smile, take a deep breath and know your child is more than a diagnosis and they are lucky to have you as their mom! Keep reaching for those dreams!

Autism and the Sense of Smell

Autism and the Sense of Smell

I saved the sense of smell until last because it seems to be the sense that Casey and Rob have the least issue with. Maybe that’s because their sense is hypo-sensitive and they don’t know what they are missing. I have rarely seen Rob bending closer to something to smell it better, but Casey does. Rob is more concerned with how things look, feel and sound.

For a long time, Casey would smell her food before she would eat it, but I don’t see her doing that much anymore. She eats almost anything so maybe she really does have a hypo-sensitive sense of smell. Taste and smell go hand in hand when we eat and her ability to eat a wide variety of foods might be a sign that she doesn’t notice the smells of some foods.

Rob never smelled his food, but he also won’t smell a flower if I asked him to. He might bend down to it, but he won’t really smell it. It’s almost like he isn’t sure what is expected when I ask him to do it. Casey will smell shampoo, deodorants, toothpaste. He just uses what he is given.

She also used her sense of smell to get back at me for telling her something she didn’t want to hear. It drives me crazy when she leans into my hair and takes a deep breath to smell it. Unfortunately, I made the mistake of telling her not to do that and now, if I have made her mad, she will lean on me and smell my hair. (Yeah, I know having your hair sniffed isn’t that big of a deal, but it drives me nuts the way she does it! 🙂 ) More proof that people with autism do have a sense of humor – she will lean in for a sniff and just grin her ornery grin as she knows she has gotten my goat again.

Casey will tell me if something smells good or bad. Rob just looks at me like he has no idea why any smell would be good or bad. I know he can smell, to some degree, but he is definitely hypo-sensitive in that area. I think Casey is, too, as things that smell bad never get her attention. I’ve driven by skunks on the road and made comments about the terrible smell and they both look at me like they have no idea what I’m talking about. I’ve never seen either one of them wrinkle their nose at something that stinks. Nor do they seem to enjoy smelling flowers or fresh cookies.

For people with hyper-sensitive senses of smell, the world can be a rough place. Ladies with a lot of perfume on – fires burning – lit candles – even shampoo or soap can be extremely painful for them and can cause them to feel sick. Think about times you have smelled something and felt nauseous from it – imagine that 24 hours a day, 7 days a week. Is it any wonder that sensory issues can cause meltdowns? I’m not sure I would make it an entire day dealing with what Casey and Rob handle every day. They are stronger than me.

If you notice your child avoiding certain foods, people or places, think about what they may be smelling. Is there someone wearing heavy perfume? Does the food have a strong odor? Even bath time can be difficult if the scents of shampoo or soap you are using are too strong. Try unscented items for a while and see if that helps. (But remember – our kids have amazing memories and an inability to generalize, so it may take several tries before you have a calm bath time with new shampoo!)

You should be able to discover how your child’s sense of smell is affected fairly easily, if they are willing to try. Gather several items with different scents and see if your child is willing to sniff everything. If they avoid it all, I would guess they have a hyper-sensitive sense of smell and will avoid anyone or anything that has much of an odor. (remember – they can smell things we don’t – if they avoid it, they can smell it, even if you can’t!) If they will smell the items without much reaction, my guess is they have a hyposensitive sense of smell and aren’t able to notice the odors.

Keep in mind that, just like everyone else, their bodies change as they grow up and the way their senses are affected may change, too. Very few things in autism are permanent. 🙂

Autism and Age Appropriate Gifts

Autism and Age Appropriate Gifts

I was scrapbooking pictures from Casey’s birthday this morning and, of course, the picture with this post caught my attention. She was so happy and excited to get a new Bert! I have a whole series of photos that shows her excitement and that made my day! You know how you feel when you find that perfect gift for someone and you see their happy smile? I felt even happier than that.

But as I was putting her pages together (with her help – she loves bright colors and the more, the better! 🙂 ) I realized that lately, I’ve seen so many posts about buying only age appropriate gifts for people with special needs. Now, before we go on – there are thousands of people with autism or other special needs who only want age appropriate gifts and that’s awesome! Go for it! But – for many, what they like are items for younger people – or other obsessions that make no sense to anyone but that person. And that’s ok!

Before we drill age appropriate into too many heads, let’s stop and think about the craziness that occurred many years ago when Beanie Babies came out. Those people who were mobbing the stores to buy the stuffed toys were not children – why was it okay for those adults to buy Beanie Babies, but it isn’t okay for Casey to love Sesame Street?

Why is okay for people to collect comic books, but it’s not okay for Rob to want Wizard of Oz items? Which, by the way, are incredibly collectable to people of all ages! Why can’t he love Mighty Morphin Power Rangers when so many adults love The Avengers? (including me!) Who decides what is age appropriate, anyway?

Rob loves Legos – and I’ve seen hundreds of pictures of “typical” adults with their intricate Lego pieces. Casey loves color by number books – and how many adult coloring books are being sold now? Thousands! Rob wants metal signs and I see shows all the time where people are buying signs for their collections.

My point is – you need to do what’s right for your child. Too many people have too many opinions about how to raise other people’s children. Ignore them. If your child wants Barney videos, buy Barney videos. If your child wants a Cookie Monster shirt, buy a Cookie Monster shirt.

I do understand the reasoning behind pushing for age appropriate items. For many of our children, their “quirks” already make them stand out and if they are walking around with a Big Bird toy, they’ll grab even more attention. I get it. But – why should I try to change my kids to fit into a “normal” mode? As Dr. Seuss said, “Why fit in when you were born to stand out?” Stand out happily, brilliantly, awesomely! This works for us – no mold fits our family and I love it!

Casey and Rob don’t care about “normal.” They don’t care what others think of what they buy or what they wear. (Rob worries about people being upset with him, but doesn’t care about shallow opinions.) They want to be happy and get to choose their new things when we go to the store. They want Santa to bring them new toys and for the Easter Bunny to hide eggs with candy (Well, Casey wants the eggs hidden – he couldn’t care less).

Remember – this is how our family feels. You need to think about each child differently, as some will only want the same things as others their age. It all depends on the person and their abilities. Casey does like getting clothes, but she doesn’t care about the brand of jeans she wears. Neither would want new phones or other gadgets many people their age would want. Your child might want those things. I’m in no way saying that what makes Casey and Rob happy is what everyone needs to do.

I’m just wishing that people would stop worrying about what they think I “should” buy for Casey and Rob. I would never dream of telling another parent what they should purchase for their child – why in the world do people feel it’s okay to tell me because they have autism?

Rob’s Easter basket included packs of cards, packages of clay and craft foam. He was so happy! He was busy for hours, cutting and ripping. Some would say it’s a waste of money to buy things he’s just going to rip up. I say, he’s happy and it’s his money, so leave him alone. Casey had very simple Easter crafts to do. Some might say they were too childish for her – but she was happy to paint her bunny figurine and it’s proudly sitting on her dresser now.

So don’t let anyone tell you what you “should” be buying for your child. Who cares what they think, anyway? What you want is to see a beautiful smile when they open their gift, just like the one on Casey’s face as she holds her new Bert. 🙂

Autism and the Sense of Sight

Autism and the Sense of Sight

First off, please remember that what I share on this blog is our life. I’m not a doctor or therapist or any other professional. I’m sharing ideas that might work for your child – but you need to decide what to try and what to ignore. As I’ve said before, what works for Casey may not work for Rob and vice versa.

On to their sense of sight…

Since they can’t tell me exactly what they see, I rely on what they draw to tell me how well they see. They both have hyper-sensitive sight, meaning they see much better and more details than most of us.

Casey can color and paint the smallest details on her projects – but only if she sees the need to do that. 🙂 Often, she is in such a hurry to move on to the next project or fun thing to do that she rushes through her art. I have only a few examples of the details she sees in things.

Rob, on the other hand, can use his iPad to draw amazing pictures with details in the cars and characters that I’ve never noticed. The little things that tend to blend into the bigger picture, he sees. He used to use the “paint” program on my old computer to draw characters from the Wizard of Oz – and every one would have little details. Dorothy’s shoes had sparkles, her basket had weave, her dress was perfectly spaced blue and white checks. The lion had a puff of long hair at the end of his tail and the scarecrow had hay sticking out in different places. I so wish more of those pictures had gotten saved and printed. But, when Rob is done with his drawing, he immediately erased it. I only have a few of them. 🙁

His drawings of trucks and cars include the smallest details of the hub caps of each car. He knows the license plate numbers of several vehicles. He can tell from several blocks away if a car coming towards us is someone we know. I’m lucky to notice as we pass!

When he uses sidewalk chalk, he draws each letter in calligraphy. He can write beautifully – again, when he wants to. Most of the time, he seems to think what I’d like him to do is pointless, so he is fast. But, when he writes thank you notes or signs cards, he carefully and perfectly signs his name. He can make elaborate creations with his Legos, but often sticks to his trees and power poles. (He still stares at power poles with a fascination I don’t understand. I’ve wondered if he hears a hum from them.) Wind turbines are especially fascinate him – he could watch for hours.

Rob loves running water – ocean waves, waterfalls, creeks. I know it is incredibly relaxing to him, but I’ve also discovered that he loves them because of the patterns he sees in each. He sees colors and designs where I see running water. I love waterfalls for the beauty I see, but he sees a much deeper beauty in each. No matter how small, he has to stop and stare at running water. A few summers ago, he actually went wading with us (it had been years since he did that!) and he just stood and stared at his feet.

When I got closer, I could hear him talking. He was naming all of the colors of small pebbles he saw by his feet. Again, I saw some colors, but to me, they were mostly brown or tan. Rob saw so many more colors than I did, until I finally slowed down and really looked. He will stare at a fire – flowers blowing – blades of grass. He is in his element in nature.

Something else I’ve learned. For Casey and Rob, looking into someone eyes is very distracting. They have both told me that eyes move. I couldn’t understand what they meant until I really studied how the eye works and understood that they were seeing the pupil constantly move. They also see the different colors in people’s eyes. You may think your eyes are blue or brown, but to Casey and Rob, there are lots of colors in them and those colors are distracting.

I’ve often heard people with autism say “I can listen to you or I can look you in the eye.” That is definitely Casey and Rob. That is one of the first things I try to explain to new people they meet – they are always listening, no matter what they are doing. Please be aware of this when you talk around your child. Even when they are completely occupied with something, they are listening!

One thing does surprise me with their eye sight. I know they are both very sensitive, but sunlight doesn’t bother either of them. They have sun glasses and might wear them, but they don’t insist on it. I would think that if they see so many details, that sunlight would be hard to handle, but they don’t seem to care.

I do know a few people with autism who choose to wear dark glasses as much as possible to try and block out some of the constant details that are always around them. Rob had a really hard time in stores as a little guy because he saw the lights constantly flickering. Casey would have meltdowns because the flickering lights were making her feel sick. If your child has a hard time in stores, try putting sunglasses on or letting them wear a hat they can pull low over their face. Movies theaters are also difficult because of the flashing lights in the dark room.

When your child has a meltdown, try to write down where you are, what is around you – you may discover their problem is too much visual stimulation and they can’t get away from it. This may also be the cause of your child wanting to walk with their eyes closed. Bumping into things is easier than dealing with the constant stimulation of colors and shapes around them.

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?

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.

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!