Tag: autism parenting

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Autism Times Two – Who is Easier?

Autism Times Two - Who is Easier?

Last week, someone wondered whether Casey or Rob was easier to live with.  As if autism could be classified into easy or difficult!  But, the question did  make me think  – and here’s the answer.  All three kids had their quirks growing up that made me want to pull my hair out at times!  None of them were more difficult than the others – just different.

When they were little, Casey had more behaviors than Rob did.  Her  meltdowns were terrible to see and to live with.  Now, I know that she was having major sensory issues and that she couldn’t handle changes in her routine easily.  At the time, I just wanted someone to help her – or give us all ear plugs.  Casey also liked to dart away when we went places.  She even left the school playground a few times.

They were both a challenge to keep safe.  Neither had fears of anything – heights, water, streets – who cares?  Nothing can hurt them, right?  He didn’t run away as much in stores because he wanted to ride in the carts for much longer than he should have.  He simply felt safer in them – his sensory issues were beginning to show up.  I remember a day in Wal-Mart when two boys kept staring at him and making comments.  Their mom didn’t hear them, but I did.

Unfortunately for those boys, I was not in a good mood.  It had been a rough few days with little sleep and I was not in a forgiving mood.  As we passed them in the aisle, one made another comment about the “big baby” in the cart and I lost it.  I said excuse me to the mom and then proceeded to tell those boys – so she could hear every word – just why he was in the cart.

I said he had autism and the lights and noises in the store were painful and scary to him.  And that he knew they were making fun of him and that was causing him even more pain and anxiety.  I told them if they wanted to grow up to be mean monsters, they were on the right track.  Their mom was so embarrassed that they had said anything.

I’ll give mom a lot of credit – she clearly stated she would not put up with that and made the boys apologize to both Rob and me.  Then she did, too.  She was nearly crying that her sons had acted that way.  I bet they didn’t anymore.

Anyway, I think Rob’s lack of behaviors were a big reason that he wasn’t diagnosed earlier than he was.  He was simply a thrill seeking, happy, quiet little guy.  He communicated his wants without saying a lot and went anywhere we wanted to go without fuss.

As they got older, Casey’s behaviors went away for the most part.  She learned that changes in her routine were not the end of the world (and calendars helped with that so much!) and that screaming didn’t help her feel better. (Not that she doesn’t still let out a scream once in a while, but thankfully, the full blown meltdowns are extremely rare…knock on wood!  🙂  )  She has always been more self-confident in herself.  She firmly believes she is who she is and if you don’t like it, tough.  She doesn’t seem to care about having friends.  She has us and that’s enough for her.

Rob, however, wants people to like him.  He wanted friends when he was little and thankfully, he had a great group of little boys who accepted him as he was and made sure he always had someone to play with at recess or someone to sit with at lunchtime.  He gets upset if he thinks someone is angry with him and his anxiety goes through the roof.

He doesn’t seem to care as much about having friends, now.  He knows who likes him and he’s happy with that.  He goes places with groups from the workshop and will tell me who is his friend from there.

Each of them have their own difficulties in life.  His anxiety and sensory issues (including weather changes) make it harder to take him new places or get him to try new things.  She is more demanding than he is and more likely to get upset if something doesn’t go the way she wants.  He rarely gets angry – she rarely gets her feelings hurt.

His sensory issues are harder on him than hers are on her.  She plugs her ears and is good to go.  He can’t eat certain textures without gagging, or wear certain  materials.  He gets hot easily – she is usually cold, eats almost anything and has more clothes than anyone needs.

It always amazes me what people will ask.  I’m here to spread awareness of autism and other special needs, but some questions are just crazy!  Would you ask someone with typical kids who was the most difficult of their children?  Probably not, but because they have autism, it’s okay to ask.  I’m actually okay with the question – it just struck me funny for one simple reason.

When I get asked about living with autism or their behaviors – anything like that – I always have to laugh to myself.  I would much prefer my life to many others!   I’m excited when my kids talk back to me (they talked appropriately – YES!).  When my kids have behaviors, it’s not them being brats (like so many “typical” kids!), it’s sensory issues.  (usually – there are times when they are just being turkeys!  🙂  )  I know where my kids are – no late night worrying (well, not about where they are – there are always late night worries!), no driving or insurance.

Autism doesn’t make one child more difficult than another.  Just like everyone else, they all have their own issues to deal with (sometimes, I think people forget that everyone has issues – not just those with special needs!) and some issues are more demanding than others.  Casey, Mandy and Rob all brought equal amounts of stress and love, sleepless nights and happy hugs, smiles and tears to our family.  They are all amazing and I wouldn’t want to change any of them!

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How Autism Alters Birthday Expectations

How Autism Alters Birthday Expectations

In just a few days, Rob will be 26. Casey is more excited about it than he is – at least, so far. She wants cake and ice cream and balloons and presents. He wants to eat Long John Silvers for supper.

Rob doesn’t like being the center of attention. He likes opening presents, but won’t tell anyone what he would like. It’s almost like he thinks the presents just appear. He knows who gives him what, as the kids are expected to write thank you notes after receiving gifts (yes, probably an old-fashioned idea, but I insist and they do them without any fuss.) I help them by writing “Dear — ” and then they do the rest. Usually very short and sweet, but I think it’s important.

Anyway – he wants “presents” for his birthday. Any suggestions I give him as to what he might like, he just repeats. I struggle every holiday and birthday because I desperately want to give him things he wants. When he was little, it was easier – blocks, trucks and anything with ABC on it. Dr. Seuss books, Power Rangers, Wizard of Oz – all sure bets. Now, it’s harder. He used to want CDs or DVDs but he watches/listens to everything on his iPad now.

While he doesn’t completely understand gift cards, he does know that when he gets one with the golden arches on it, he gets to go to McDonald’s. And finally, a year or two ago, he understood the idea of money and being able to go buy what he wants. And I’m letting go of the idea of spending money just so he has something fantastic (to my way of thinking anyway) to open.

Because a week or so ago, I was looking through my scrapbook of the kids’ birthdays and I found his 10th birthday. You can sense my excitement over that day even now, as that was the first year he asked for a party! We had always had his cousins come over, but he never cared at all. He would open the presents, blow out candles on a cake he didn’t want and hide in his room.

But – that year! He wanted hamburgers and he wanted kids to come and swim with him. And we went all out for it! He had his cookout and they went swimming (until a storm blew in!). He opened presents and they went swimming again. Every picture of him that year shows a big smile on his face. He was playing with the kids (true, they were all in the pool together, not really one on one but he was having fun!).

I noticed something else about that year. I had listed his favorite presents – 10 packs of crayons and a jar of dill pickles. So simple, yet he was excited enough to hold them up to the camera so I could take a picture.

Every time it comes to buying presents for him, I tell myself (and I wrote it in this blog at Christmas!) that I’m going to buy stuff he likes. And I do, but I feel guilty if I don’t spend as much on him as I do Casey, Mandy and Cory. I know he doesn’t know the difference, but I do. I can tell myself a hundred times to let it go, but it bothers me.

This year, I bought him a few more street signs for his room, some clay to cut up and an ABC banner to hang up or rip up (it was only $1!) And I’m going to give him money to go to Walmart and pick out what he likes. Maybe a huge jar of pickles (I hope he’ll share!) or 15 boxes of crayons (which he doesn’t use anymore – his stockpile numbers close to 1,000 crayons now) or maybe he’ll buy packs of paper to rip up. It will be his choice, not mine.

Birthdays are a big deal to me.  I like making the birthday person feel special on their day and autism has an affect on that expectation.  I want to celebrate and buy the perfect gift.  I want to make the day awesome.  Casey is much easier to do that for – she loves everything about birthdays.  Rob, not so much.  He enjoys presents, but doesn’t appear to care what he gets.  He wants to pick where we eat supper at.  He wants Mandy and Cory and Grandma and Grandpa to come.  And he wants to disappear into his room as soon as possible.

I worry that he really wants something, but doesn’t have the ability to tell me.  Then I worry that he’ll be disappointed when he doesn’t get that special gift.  (Yeah – I worry too much at times!  🙁  )  Rob will know it’s his birthday because I will wake him up singing, but otherwise, he’ll go to Hopewell and be thinking about supper.   He won’t tell me his birthday or how old he is.  (He looks at Casey and waits for her to answer for him!)

So birthdays are another part of life that gets altered because of autism.  I have to let go of the idea I have of a perfect day for him and make it his idea of a perfect day.  It won’t match mine, maybe, but if it makes him feel special and happy, then that’s what we’ll do.

Happy Birthday, Robbie-Dodger – my little boy in a grown-up body, who still loves his Power Rangers and the Wizard of Oz, who loves ripping paper and magazines, who loves french fries and tacos and thinks his sisters (and Cory!) are the coolest people in the world.  I promise to make your day just what you want!   🙂  🙂

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Random Thoughts from an Autism Mom

Random Thoughts from an Autism Mom

Usually, I have a pretty good idea of what I want to write about a few days before I sit down to write this blog.  This week has been so crazy that I’ve jumped from idea to idea and none are working.  So, for something different, I thought I would share some thoughts I had about autism and our lives.

Autism thought #1.  Full moons are beautiful.  I love sitting on the porch steps and looking up at this perfect circle and imaging all sorts of thoughts.  I also hate full moons!  I dread them with a passion because I never know if this will be a good moon or a bad one.  This one was not good.  We felt the affects all week and while they are subsiding a little, I can still hear/see the anxiety in both kids.  Rob has been loud and anxious most days and Casey is on edge.  Thankfully, we’ve made it this far with no major behavior issues.

Autism thought #2.   Rob is still surprising me nearly every day with a new skill or ability to try something new.  He is enjoying more activities at the workshop and has more patience to be in new places.  Today, we went to my aunt’s house to pick up several things and he wandered around her yard like he had been there a million times.  He never sang his stress song and he even helped load the bricks into the car. (He did, however, freeze at the sight of a huge cricket on the brick he was holding.  Thank Mandy for that!  🙂 )

Autism thought #3.  I don’t understand selfish people.  I don’t understand how people can put their own wants above their child’s needs – especially a child who doesn’t understand why things are happening the way they are.  Selfish people are one of my biggest pet peeves and I’m getting irritated just thinking about it.  How can parents explain things to children they barely understand themselves?

Autism thought #4.  I wish the kids were able to tell me what they are feeling.  Maybe I’m getting too worried about selfish people when Casey and Rob really don’t care.  And Rob was rubbing at his ear again the other day – does he have another ear infection coming on?  (he had one right before camp and he was able to tell me it hurt and he needed Dr. Myers.)  Casey is so on edge – if I knew what she was feeling, maybe I could help!

Autism thought #5.  I wish – and I mean, really, really wish – that Casey’s memory wasn’t as good as it is.  She can remember things from before she was a year old. (When asked what happened on March 22, 1988, she said “got born, got cold, cried.”) She remembers what day we do things and used to expect the same thing to happen the following year.  For a long time, she got really upset if we didn’t follow the same dates, but now, she just reminds me.  Over and over and over.  On this day last year, we went to a state park near us and went swimming.  So, she was insisting we do that today, too.  Luckily, going to my aunt’s house made her happy.  But I know I’ll be hearing “Salt Fork, Salt Fork” many times until we finally make the trip.

Autism thought #6.  How weird is it that I’m thinking of finding someone I know, but the kids don’t to see if they will leave with a stranger?  This has been weighing on my mind a lot lately.  I hear of so many kids that are taken and it makes me sick.  Several months ago, Casey and a group of friends were followed in our local Walmart and then to another store.  Luckily, the staff that was with them noticed and kept the girls together until another staff member got there.  (the men were driving a windowless van and left when the male staff arrived.)  It scares the hell out of me.  Most of me thinks they would ignore strangers, but what if that person said they had French fries?  or a coloring book?  I just want to know if I’m worrying too much.  I’m sure if a person tried to grab them, the fight would be on, but if they just talked to them, Casey and Rob might walk with them.  (Not that they are ever alone in a store, but if one wanders off while I’m helping the other?)

Autism thought #7.  I feel guilty.  I don’t think I do enough with the kids at times.  While most of the time, I know this isn’t true, I wonder.  Casey would love to travel more, but Rob wouldn’t.  The effort to balance both their needs is exhausting at times and adds more guilt that I really don’t need to feel.

Autism thought #8.  I’m tired.  Lately, I’ve had a hard time relaxing – I always feel like I need to be doing something.  I have a list of things I wanted to get finished this summer and I feel like I’m running out of time.  I’ve missed yoga and working out just to work on another project.  Late last week, I decided enough was enough.  I left everything alone on the list and worked out.  Then I did yoga – and I felt amazing.  Relaxed.  I really need to stop running around and feeling like I’m accomplishing nothing.  One thing at a time and no more trying to do a million things at once.

Autism thought #9.  Blue (our new black lab puppy) was a good choice.  She wants to play with the kids, but seems to understand they aren’t like me.  I took her to the kids’ workshop the other day, fully expecting her to be wild (she loves attention!) but I was surprised!  When some people pet her, she wiggled and was her usual self.  When others, who had more physical issues, wanted to pet her, she lay still in my arms or stretched to lay her head on their arm or shoulder.  She sensed what they needed.

Have a wonderful, full-moon-less week!  🙂

 

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Home from Camp – Back to our Normal

Home from Camp - Back to Normal

Thank you, Camp Echoing Hills for another amazing week of camp for Casey and Rob.  While I’m still only hearing bits and pieces, from the smiles and giggles that accompany those few words, I’m sure they had fun.  Casey has already mentioned that camp is in July 2019 and wants to write it on a calendar. (Luckily, we don’t have next year’s calendar, yet!)

Casey sang in the talent show and one of the staff was sweet enough to record it for me so I could enjoy it, too.  (The fact that Rob is asleep on the floor behind her just adds to my love of the video!  🙂  )  She chose to sing Baby Blue – the same song she sang at the other talent show a few months ago.  I wish she would sing more – she truly has a beautiful voice.

Rob told me the pool was the best and he got wet.  He said he saw a cross and he saw a fish.  He said Donald is his friend (and another name, but he’s saying it so quietly, I can’t quite tell who he is talking about).   Casey said Bert liked camp and that he snored (for those who don’t know, Bert is a stuffed toy from Sesame Street!)  She went swimming and she went fishing.  When asked what she caught, she said a hot dog.  I’m a little lost about that because she’s insistent that she caught one.  Maybe they use hot dog as bait?

Mandy was actually getting off work as I got there to pick them up, so they got to see her, too.  They were both waiting on the porch.  Casey’s eyes were twinkling and she came right to me for a hug and a sweet smile.  Rob was a little farther away and he let out one of his loud yells before he came to me.  (Maybe he didn’t want to leave, yet? 🙂  )  More likely, he was singing his storm song as the weather was crazy that day.  Either way, I got my super sweet hug from him as soon as we got home.

They were both surprised when we got home.  I had given both rooms good cleanings when I didn’t have them to help me decide what to keep and what to throw away.  Casey laughed and laughed that her Sesame Street stuffed toys had gotten baths.  She had to arrange them perfectly – apparently, they go in a special way that I never thought to look at before I took them off the shelves.

Rob was concerned because I threw away a bunch of his magazines.  I really try to not throw anything of theirs away without talking to them first, but he had too many.  There were two stacks and each stack was close to 5′ high.  One fell the night before they went to camp and we talked then that he needed to get rid of some before they fell and hurt him.  Once I gave him some card stock to rip up, he was fine.  I still felt guilty, though – even knowing it needed to be done.

My week didn’t turn out quite like I had hoped.  Every thing I tried to do seemed to take four times as long and nothing went right.  The cans of paint for the living room didn’t match and the floor wouldn’t go back together.  I was close to tears by Monday evening and ended up having to make another trip to the home improvement store to have them remix the paint and buy a new floor.

Believe it or not, even the third can of paint didn’t match. (Only someone as lucky as me would take the “mistake” can back to be matched!)  Still, after bumps, bruises and a few tears, the living room was finished.  I still don’t have everything put back or things on the walls, but at least we can sit and I didn’t bring the kids home to everything piled in the dining room!  Rob would have really been flapping at that, while Casey would have giggled because I messed things up.

As much as they love camp, they are happy to be back home.  Rob has asked for Hopewell 15-20 times today, just making sure he gets to go tomorrow.  Casey has happily refolded her huge collection of socks for hours and both are happy to have their iPads back.  Card stock has been ripped and they got to spend time yesterday with Mandy and Cory.  Later today, they are going to Grandma Rose and Grandpa Mack’s house and they are both excited about that.

Life has returned to the normal we know.  It may not look anything like your normal, but that’s okay.  We do our own normal and it works for us.  I didn’t get as much free time as I had planned while they were gone, but at least they weren’t here for the mini-disasters!   🙂   And they had so much fun with their old, both new and old ones.  Thank you again, Camp Echoing Hills, for giving Casey and Rob a week of fun and for giving me a week to do what needed done without the added stress of autism!

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Summer Camp Time – How to Spend the Quiet Time

In about an hour, I’ll be loading the kids and all their stuff into the car and heading to Echoing Hills for their week of summer camp.  Casey can’t stop giggling, while Rob just keeps asking for camp.  And autism mom will be wondering what to do first.

They are packed and ready to go.  Casey finally made the biggest decision of the summer and chose Bert to go to camp with her.  She was trying to choose between Grover and an Elmo that haven’t gotten to go, yet, but apparently, at the last minute, she decided Bert needed to get away.  Her eyes were twinkling as she packed him carefully into her suitcase with a soft towel to keep him safe.

Last night, I heard Rob in his room, but I couldn’t tell what he was up to (and isn’t that scary, autism parents??).  When I went to check, I found him carefully packing his clothes.  He was folding each item neatly and putting all of his pants in one corner of his suitcase and his shirts in another.  I was so proud of him!  He even thought to put his towels and underwear in, too!

It was so cool to see him take such an active interest in packing.  Usually, he just makes sure I pack his favorite clothes (is it terrible that I wouldn’t mind if some of them didn’t come home?  🙂  )  But, if he lost something precious to him out there, I’m sure it would cause anxiety the next time, so I guess I’d just better hope it makes it home.   I’m sure he was packing for two reasons – because he was excited and to make sure I didn’t put any new clothes (God forbid!) in his suitcase.  He wants his comfy stuff and that’s all we packed.

I know lots of families take advantage of the kids being cared for for a week and take trips, but I like being home.  It sounds silly, but it’s so cool to not have to think about helping with baths/showers for a few nights and to watch TV at 8:00 if I want (that’s usually bath time)  I can go to bed at 9, if I want and not need to wait until they go to sleep.  I can have some junk food without them trying to sneak some, too.  (By the time I have a snack, they have already had theirs and I really watch how much they eat)

So, this week, I’m painting the living room and fixing the floor.  I could do it with them here, but it’s so much easier not having to worry about Rob’s anxiety when he comes home to discover Mom has destroyed the living room and moved everything.  I can take my time and not kill myself trying to get it done in one day while they are at the workshop.  Anyone else know what I mean?  🙂

As happy as they are to go, I have mixed feelings every time.  I know they are happy and having a great time and I do enjoy the break from autism, but they are such a part of me, that sometimes, it’s hard to separate us.  Maybe that doesn’t make much sense, but being a autism mom is me – the main thing in my life.  Not having someone to take care of is odd to me.  Enjoyable for a few days, but then I’m ready to get back to our routine.

The week will go so fast, but I’ll be one of the first moms to be at the camp Friday.  I can’t wait to see them.  I will wonder on the drive out if they will react like usual – Casey running for a hug with a big smile and Rob barely acknowledging me until we get home, when he leans his forehead to mine and smiles his sweet smile.

This year, I have a better understanding of what they will be doing doing the week.  I’ve volunteered at the camp on Mondays this summer and I’ve seen what they get to do.  I’ve always heard about it, of course, but seeing is even better.  And I’ve seen the same counselors week after week, happily helping whatever group is there that week.  (Each week is a different group – children, teens, young adults, older adults, autism, etc)  I’ve seen them go without their own lunch to follow a wanderer around the room to be sure that camper is safe.  I’ve seen them help campers eat and laugh at the silly jokes of others.

I’ve seen them dance silly dances because a camper asked them to.  I watched them carefully wipe faces of older adults and children.  I’ve seen them deal with difficult behaviors with a smile on their face and comfort a homesick camper.  To be honest, I could be a counselor for a week, but I’m not sure I could do it for the whole summer.  Maybe because care taking is a full time thing for me, while for the counselors it may not be.  Either way, the love I’ve seen makes this summer even easier to drop them off.

It also helps that Mandy works at the camp, now.  If there is an emergency, she can be with Casey or Rob in minutes.

So I’ve been thinking about what else I want to do during the week.  I’ve got my plans for the living room laid out, but I want some fun, too.  Walks with Blue and my friends, maybe?  Maybe I’ll read a book all day.   Maybe see a movie – or just watch a movie at home in my PJ’s.  Maybe I’ll go to the pool with my friend and not have to worry about watching the kids – can you imagine just sitting on a chair and catching some sun instead of chasing kids?

Maybe I’ll eat popcorn for supper one night and French fries for lunch.  Maybe I’ll sit in the porch swing for hours and watch the birds.  Maybe I’ll take a nap every day and stand in the shower for as long as I want.  Maybe I’ll get groceries.  Maybe I’ll write.  Maybe I’ll finally catch up on the list of stuff I wanted to get done this summer.  Maybe I’ll spend the week crafting.  Maybe I’ll go through their clothes and get rid of what doesn’t fit anymore.  Maybe I’ll just watch the ceiling fan blades go around.  The whole plan right now is to not have a plan.  Walks early in the morning and workouts in the afternoon, maybe?  Yoga on the patio as the morning warms up.  Who knows?

Casey is still giggling and saying camp every few minutes.  She apparently is worried that I’ll forget that today is the day!  The day she has been waiting for since last July.  They both love the weekend respites, but summer camp is extra special.  She is asking for certain counselors and talking about the talent show.  Rob is just watching me and waiting for me to say those magical words “It’s time to go!”

** Update – when I said it was time to go, Rob ran to car and refused to get out for a picture so Casey got as close as she could.  😊

When I was leaving, Casey barely looked up from her color by number, but Rob stood up, gave me a real hug and said “Wuv you, Mommy Jen” all before I said anything to him.  I had tears in my eyes – first time he has ever said that unless he’s repeating what I said to him.  💙💙💙💙

 

 

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Why do We Try to Make People with Autism Just Like Us?

People with autism

One of my favorite quotes from Dr. Seuss is “Why fit in when you were born to stand out?”  How true this is!  I have a t-shirt that says it and a sign in my bathroom.  And I try really hard to live it every day – both for myself and for the kids and their autism.

It really is a pet peeve of mine.  Think about it.  Do you ever multi-task when you are watching TV?  Maybe clean while listening to the show?  Does anyone harass you to look at the TV so they know you are paying attention to it?  Nope.  But people constantly try to force people with autism to look at them while they are talking.

Is it more polite to look at someone when they are talking?  Sure – but do you always do it?  Don’t you look around while they are talking?  And do you still hear what they said?  Exactly!  And people with autism have so many sensory issues that I’m sure they hear even more than we do when they aren’t looking.

Casey told me a long time ago that eyes move.  I couldn’t understand that and she couldn’t explain until I read an article about eyes and how they are almost constantly in motion – the pupils, the eye lids, etc.  Can you imagine trying to listen to someone while their eyes are bouncing around?  Of course, most people don’t notice the eye movements, but if you have autism and have hypersensitive sight (see too much), imagine the distraction that would be!

I stopped telling the kids to look at me years and years ago.  Even before I knew why they didn’t want to, it seemed pointless.  I knew they were listening to me, even if they weren’t looking.  (I learned that the hard way when Casey repeated a sentence in a very inappropriate place!  🙂  )

From a young age, children with autism are taught to act more like their peers.  I understand that, in some things, this is a great idea, why do we expect them to become mirror images of other children?  We don’t tell a typical child to eat something that will make him/her sick, but we try to convince a child with autism to try it.  We don’t force typical children to wear clothes that cause them pain, but we want kids with autism to try them.

When a typical child says “No” to trying something, often, we let it go and hope to try again later.  When a child with autism says/indicates no, we try “if, then” statements or “now, later.”  We try to reason with them.  Why?   Not this mom.  I say “are you sure?” and move on with life.  Cause to be honest, if someone tried to force me to eat certain foods, I would have a meltdown myself.

Don’t you have any foods you don’t like?  Fabrics that you don’t like to wear?  How about sounds that bother your ears?  You don’t have autism – you just have preferences.  Why can’t we accept those preferences in our kids?

Don’t misunderstand me.  There are times when Casey and Rob are not given choices about doing something.  They are not allowed to sleep at work (is anyone?).  They are not allowed to steal.  They have to take baths/showers and brush their teeth.  They have to help with chores around the house.  But – I don’t ask either of them to do something that would truly cause pain.  Rob would have a hard time using a sweeper because of the sound, while Casey puts a finger in her ear and does it.

Their autism is part of who they are.  They are adults and should be treated as such as much as possible.   I know some decisions are beyond their understanding (why can’t we stop for ice cream and a coke every time we go to Grandma and Grandpa’s house?) but I try to help them through the hard choices.

Rob gets hot easily, but refuses to wear shorts.  I tell him he would be cooler in shorts, but that’s a decision he can make without causing harm to himself.  Casey has a calendar in her head for when it’s okay to wear shorts and pants.  I have told her it’s okay to wear shorts in April if she is hot, but she doesn’t.  Again, that’s her choice and one that won’t harm her.

I don’t wear clothes that are uncomfortable to me so why would I expect them to?  Because “normal” people don’t wear the same 5 shirts all the time?  Who cares?  I mean, really – who cares?   Another favorite quote “Those who mind don’t matter and the ones that matter, don’t mind.”  Same thing – if something about my kids bothers you, stay away.  We don’t need your negativity in our lives.

I don’t eat certain foods.  Yes, I may be more inclined to try them (Sometimes!  🙂  ) but I don’t eat what I don’t like.  And yet, we try to tell people with autism they should eat more of a variety.  Why?  Yes, there are times to be concerned for health reasons, but if your child is healthy, why worry that chicken nuggets and applesauce is the only thing he/she will eat?  Rob went for years (he didn’t have so many problems eating when he was little – it started right before puberty) only eating the same things and refusing to try anything new.  Fifteen years later, he’s willing to try most things.  He doesn’t always like it, but he tries.  Score a huge point for us!

If I was in a crowd of people and the noise/smells/pushing was getting to me, I would leave.  But how many times are people with autism expected to sit and handle the same?  Especially when the noise and the smells are multiplied for them?  Wouldn’t you have a meltdown, too, if you were forced to be somewhere that was making you physically sick?

OK – I’m done ranting.  It’s just so irritating to hear people say we need to change people with autism to be more like us.  Why?  For the most part, people with autism don’t lie, cheat or judge people.  They tend to accept everyone who respects and accepts them – and we want to change them into “normal” people?  Nope, not happening.  WE should be more like them.

Treat others the way you want to be treated.  Just like a person with autism would.  (and yes, we may have to help them understand how to do that, but helping others is always a good plan!)

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The Top 13 Things Having Children with Autism Taught Me

Top 13 Things Having Children with Autism Taught Me

Living with children with autism is a never-ending learning experience.  The therapy that worked today may not work tomorrow and the shirt that could easily be worn tomorrow might be one that couldn’t even be touched last week.  Parents are constantly on their toes for surprising new behaviors and we are always learning new things.  Here are the top thirteen things I’ve learned over the last 30 years as an autism mom.

  1. How to take out a toilet. Seriously, this is probably the one I’m most proud of.  Rob used to have a fascination with what floats and what just makes a large splash.  And since he knew he wasn’t supposed to play in the toilet, he would flush whatever he dropped so he wouldn’t get caught.  I can take out a toilet, remove the offending object (often match box cars) and reinstall the toilet in 15 minutes or so.  The only thing that ever stumped me was a plastic shot glass.  I was ready to permanently remove the toilet and insist they use a five gallon bucket over that one.
  2. How to find the softest shirts in the store. Rob’s severe sensory issues and refusal to wear shirts with sleeves or ones that he deems are not soft enough has caused me to return a LOT of clothes. No amount of washing can make a shirt soft enough for him, so we only purchase the softest ones we can find and cut the sleeves out of every single one.  I’m in the process of discovering a way to use the short sleeves cut from shirts.
  3. How to control a terrible temper. When I was young, I had a temper.  I’m sure my parents doubted I would ever learn to control it, but I did.  I needed every single bit of patience I had some days when both kids were having rough days – and I have a typical daughter, too.  I learned that getting angry really wasn’t worth the effort most days.  But, I also learned that when people realize I could blow up easily, I tend to get their attention fairly quickly – and if people see me crying in anger, they scatter.
  4. Laughing really is the best medicine. And honestly, most things are funny, if not at the time, then a little later.  I’ll admit – I still have a few days that are not funny and never will be.  They are days that I thought I would never laugh again.  But, I made it and so will every other autism parent that thinks today is the worst.  Red Koolaid slowing running down my freshly painted dining room walls is funnier than heck now.  At the time, I was ready to blow a gasket.  And that day inspired the name of my blog.
  5. Cinnamon and pepper never leave your sweeper. Yes, it’s true.  You can change the bags many times.  You can clean the guts of the sweeper.  You can use it over and over to sweep up carpet freshener, but you will always smell pepper and cinnamon until you get fed up and throw the sweeper away.  Also – green, blue and yellow food coloring has to wear off your children and it looks like they have healing bruises for weeks after painting themselves with it.  I never did find the red color.  Another thing I learned from this day – children with autism, when coached by a typical sibling – can climb drawers and cupboards like monkeys and enjoy every minute of it.
  6. The same brand of pretzel in different shapes tastes different. It’s true.  The little midget pretzels are acceptable only in certain brands, while the long rods in those same brands must never be touched.  Likewise, the long rods of another brand are delicious, while the little sticks can never be eaten.  Also – the pretzels that can be eaten at home usually cannot be eaten at any other house. Cherry tomatoes are wonderful snacks, but sliced tomatoes are yucky.  Chicken nuggets and French fries are acceptable meals at any place, at any time, but pizza can only be frozen, from a box.  Waffles should not be heated up, nor have any syrup.
  7. All Sesame Street characters, the Power Rangers and the Wizard of Oz are real people. And if you use them the right way, those characters can teach a child (or adult who is still obsessed with them) almost anything.  For years, Rob used lines from the Wizard of Oz, Lion King and Willie Wonka (the original) to communicate his needs.  I am so thankful that most movies are readily available now because when he was little, it was really difficult to find some of them and he wore them out quickly.  I’ve used silly voices (I’m especially good at Elmo, Cookie Monster, Grover and Ernie) to coach my daughter.  I can use stuffed toys to help her communicate when she is getting upset.  Autism parents do what we have to do to avoid screaming meltdowns.
  8. How to be nice – until it’s time to not be nice. I first heard this line from Patrick Swayze’s character in the movie “Roadhouse.”  It fits an autism parents’ life to a T!  When you have to deal with doctors, therapists, teachers, insurance companies, hospitals, other staff and your children, sometimes, you get fed up.  It’s hard to always be nice to people as our parents taught us to be.  I always tried to be nice, but when people decided they could make decisions for my kids based on charts and not the kids themselves, I learned to be not nice.  I learned to stand up for what they needed and not back down when people with degrees thought they knew everything.  They are incredibly smart (usually) but they don’t know what’s best for my kids.  I know my kids better than anyone!  So I’m nice to everyone – until it’s time to not be nice.  Then, watch out, people.
  9. How to speak up for us. I was a shy kid.  I didn’t like being the first person to speak unless I knew the crowd very well. Standing in the background was easier for me and I was quiet in crowds.  Speaking in front of a class was terrifying and likely to make me sick to my stomach.  After autism, I have been invited to speak at many meetings to share autism awareness and the stories of our family circus.  I enjoy doing these presentations because I know every time I reach one person with awareness, that person will reach another.  I also learned to speak in IEP meetings.  After all, I knew my kids the best and I knew what we needed.  Anyone who has been to IEP meetings, or any type of meeting about your child, knows how uncomfortable they can be, especially for the parents.  I learned to listen objectively and to think before I responded to get the kids what they needed.  It wasn’t easy, but my shyness is officially gone.
  10. It’s ok to ask for help.  I know most people know this, but this is still a hard one for me.  I hate, and I mean, hate, asking for help with anything.  I am always told how strong I am and to admit that I need help just drives me crazy.  But, slowly, over the years, I’ve learned that everyone needs help at times and that the strongest people know when to ask.  I have had a few emotional crying meltdowns because I kept quiet about things and didn’t ask for someone to watch the kids so I could sleep.  It’s still not my favorite thing to do, but I do ask when I need help – whether it’s watching the kids or just someone to talk to.
  11. Sleep is the most precious thing. Go ahead and laugh, but if you have ever had to go without sleep for weeks or months on end, you will understand this.  For many, many years, Rob couldn’t go to sleep at night and when he finally did crash, he was up and down several times each night.  I was lucky – he didn’t try to leave the house or destroy anything.  He just got a snack and lay on his bed, singing.  And by singing, I mean, squealing, laughing and shouting odd phrases until he could fall asleep again.  And on those rare nights that he actually went to sleep, Casey would be up singing, dancing and folding socks.  I am so thankful that I finally found the right combination to help him go to sleep and stay asleep most nights.  I am a new person with sleep.  Without it, I am a grouchy, crying emotional wreck.
  12. Socks are amazing and wonderful. Casey’s obsession with socks has been going on for almost 20 years with no signs of stopping. She easily has 250-300 pairs of socks and is always looking for more.  She has every color, holiday and animal you can think of, I think.  To be honest, I don’t really look at them much.  She can spend hours in front of her dresser or on the floor folding and refolding socks while she listens to music.  It is one of her coping techniques.  It’s also a great way to find kind people in the world.  Everyone who meets my daughter finds out her love for socks – usually because she is pulling up their pant leg to see what their socks look like.  Yes – even to complete strangers.  While this is usually met with a smile after I explain why she is doing it, at other times, it isn’t a pleasant experience.  I still hope the man who screamed at her in a craft store many years ago remembers us.  I sent the kids to the van with their sister and then I had a rather loud, possibly cuss-word filled discussion with him.  When it was over, the manager told him to leave and the crowd clapped for me. 
  13. It is possible to hear the same word/phrase/sound for hours and eventually not notice it. Rob gets fixated on phrases that he uses to help calm his anxiety.  When I sold our van last summer, after having it for 13 years, he said “Get the van.”  And said it and said it.  For the first few weeks, it was pretty much constant.  We drove to a park near our house (a five to six minute drive) and he said it more than 50 times.  I heard it every single time that night, but eventually, I only heard it when he was right in my face or yelling it at the top of his lungs.  It took him almost 6 months to stop saying it a lot.  That phrase still pops out every once in a while.  He has several phrases that he repeats over and over when his anxiety is running high.

Any situation can be a learning experience, if you are willing to think outside the box and laugh a lot.  Parenting is funny but when you had autism to the mix, life really gets interesting!  Now – what cool things has autism taught you?

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Autism and the Every Day Never Simple Questions

Autism and the Every Day Never Simple Questions

Autism is part of our lives.  A huge part – even if we don’t always consciously think about it.  I’m facing a decision  now that should be fairly easy, but autism is causing me to rethink everything.

Several months ago, I lost my sweet lab to lymphoma.  She was just a baby when we got her and she grew up around the noise and unexpected jumps, squeals and screams that occur around here.  Even with that, when Casey had a meltdown, Eve would get anxious, barking and trying to get between Casey and I.  She never tried to bite Casey or even jump on her –  just barked like crazy.

(Picture the scene – Casey jumping up and down and screaming bloody murder while the dog is barking a high pitched bark and bouncing around with Rob rocking and yelling “no fits, Casey!”  It’s a wonder my neighbors haven’t moved away!)

Losing her was one of the hardest things I’ve had to deal with.  She was my best friend – the one who listened as I vented and let me cry on her shoulder.  When Mandy and Cory lived in Texas and it was just Casey, Rob and I in the house, Eve was my buddy.  I talked to her about everything and she kept me from being lonely.  When she died, I felt like I lost part of me.  I had no idea when I would ever feel like getting another dog.

In the last few weeks, I’ve been thinking about it.  I miss having a dog around the house, but I still think about her and wonder if I’m ready for another one.  She had so many quirks (I sometimes think she “caught” autism!  🙂  )  I wonder if I could let go of my expectations of the same quirks in another dog.  I wonder if I will love another one as much as I loved her.  And I wonder if another dog could be okay living in my circus.

I thought about getting an older dog – one that may not be as adoptable because of their age.  But – what if they can’t handle the noise?  the sudden movements?  The kids’ safety is the most important thing to me and a new dog is scary.  So maybe a puppy would be better.  One that could grow up with us like Eve did.

And today I realized that once again, autism is dictating our lives.  It should be a simple decision about whether to get a dog or not.  I get so tired of having to overthink every single decision I make.  Would Rob really wear that super soft shirt?  Will Casey be mad if I switch plans from one day to another?  Even what to have for meals!  (though that isn’t as  bad as it once was – I make what I make and Rob adapts to it or makes a sandwich)

It’s exhausting to have to think through every choice I make.  The kids want to go swimming.  Simple enough, right?  No, it isn’t.  Taking them to the pool without help is not going to happen.  Neither is taking them to the lake (though that would be easier, simply because they will stay together and with me).  I can’t take them to the river alone.

They want to go hiking.  Okay – great!  Outside and exercise… except, again, it isn’t that easy.  If we go  near a creek, Rob wants to sit and watch the water and relax while Casey wants to walk as far as she can.  He will walk, too, but watching water relieves his anxiety so much, it’s hard to drag him away from it.

This isn’t to say we don’t go lots of places without an extra adult, but going to strange places or where there are possible dangers is so much easier with an extra set of eyes on them.  They don’t run off like they used to, but who knows when it might happen again?   We do lots of things, but it’s always seems like it’s a big decision to go.  I’m tired of that.

I just want to decide to do something and do it without trying to think through every possible thing that can go wrong.  I want to take the kids to the pool if they want to go.  (I have taken them, but it’s hard and not something I really like to do.  We have a large aquatic center with a kids play area and sets of water slides – too much area for me to be able to watch them easily.)  Tracie will go with me – but there again, we can’t just go.  I need to see if she’s free and wants to go and plan from there.  I wonder if families who just decide to go swimming and leave know how lucky they are?

I try not to overthink choices too much but it’s hard when Casey and Rob are so different – even without the added stress of autism.  She wants to go – he wants to stay.  She will try anything – he has to think about it and often says no.   They are similar in ways, just like siblings usually are.  But, still, don’t you think it’s exhausting to always have to think about big (and little!) decisions so much?

Don’t you wish you could just say “Yes!  We’re going!” without thinking about the possible sensory issues or meltdowns or safety or food preferences?  I know I do!  At the same time, I wouldn’t change either of the kids.  Autism is as much a part of them as their hair color.  There are just times that I don’t want to have to think about how autism will affect a decision.

Most of the time, I don’t really think about it, I guess.  Our life is autism and I don’t think about a life without it.  I make decisions just like every other parent, based on what would be best for our family.  Autism is just so unpredictable that sometimes, decisions are hard to make.  I wish I could just decide to get another dog and go pick one out.

I asked Casey what she thought about a dog.  She wants a big one.  Rob wants Eve.  So do I.  So like everything else, we’ll see what happens.  I’m a firm believer in things happening when they are supposed to.  When it’s time, the right dog will find us.  Eve will make sure of it.

 

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Autism Moms (and Dads!) – Follow your Gut Feelings to Help Protect your Child

Autism Mom - Follow your Gut to Keep your Child Safe

When your child is non-verbal or can’t communicate easily, one of the biggest fears of parents is that someone will mistreat or be mean to their child.  I know that feeling well – and a video I saw last week brought those fears back to the surface.   The video showed a bus driver clearly mistreating a young girl with autism who wouldn’t get off her bus.  To make matters worse, an aide was standing outside the bus waiting for the child – and she left when the driver closed the door.  Why in the world didn’t she get on that bus to help that little girl?  Autism moms, let me tell you – had that been my child, I would probably be in jail right now.

I don’t condone violence.  At one point, Casey had a teacher and a principal that were not a good match for her.  The details are deep in my heart and I’m not sure even Mandy knows what really happened.  She was just a little girl and may not have understood, anyway.   To say I was angry at the teacher is an understatement.  I wanted to smack her – to beat on her.  I wanted to do to her what she did to Casey.  I hated that woman – and came to severely dislike the principal that couldn’t see what was happening.

We were advised to sue the school district.  Even the superintendent knew we would win.  We chose instead to remove Casey from that woman (actually, the school moved her – Casey stayed in the room she was familiar with.) and not take legal action.  This was our choice for many reasons – but when I think about that woman retiring with a full pension – and the other children she may or may not have been abusive to – I am angry.  I am beyond Mama Bear angry.  But, it’s over and done and I can’t change it.

But I can be more careful about the people around my kids.  If Casey or Rob seems to not like someone, I keep a close eye on that person – and keep the kids away from him or her.  I’ve told you before how quickly they “read” people.  It’s always interesting to me to see who they don’t like and wonder what is deep inside that person that the kids can sense.

I listen to my gut feelings now.  If something seems “off” about a situation, I check into it.  If the kids suddenly don’t want to do something or go somewhere that I know they enjoy, I find out why.  Several years ago, there was an issue that concerned me and I just started dropping into where they were and checking on them.  Mandy and my parents would stop in, too.

A few years ago, Rob was involved in an incident.  The details aren’t important now, but what is important is that it shook the trust I had in people.  I understood the staff’s frustration, as I know either of my kids can act up (I’ve never been a mom who says my child would never…  I’m sure they would!)  What I was the most upset about is that I wasn’t told about it until I started asking questions.  Casey kept repeating a phrase about Rob and he was upset.  Unfortunately, by the time Casey got the words out, it had been a few days since the incident.

Rob finally was able to say a word or two and another mom contacted me because their adult child was a witness and had told her what had happened.  I confronted the issue and it was taken care of.  My gut told me the day it happened something was wrong – Rob was just off and Casey was wound for sound.  But, I didn’t follow up on it right away.  (No excuses – except maybe I was just so darn tired of autism)  My gut kept at me and I checked into things.  That situation is resolved and I’ve asked to always be told right away if something happens while the kids are at work.  (Like I said, I know things happen – I just really hate not being told what’s going on!)

Even if your child is non-verbal, you will see signs something is wrong.  Maybe they get upset about getting on the bus all of a sudden.  Maybe they won’t eat at school.  Maybe they can’t sleep at night or a new behavior emerges.  High anxiety is a possible sign of a problem somewhere.  It’s hard to know what the problem might be until you start digging.  If your child refuses to get on the bus, start with the driver – has something happened?  Was there a change in the route?  Is it too noisy?  Ask the other kids on the bus – or their parents.  If the bus has a camera, ask to watch the video.

As your child with autism grows up, you will learn to become part private detective.  It’s exhausting at times, but a necessary thing to do.  Visit the school.  Become friends with your child’s teacher.  If you have concerns, voice them.  Most teachers are wonderful, but there are always a few that aren’t.  If you don’t think your child’s teacher is a good match for your child, speak up.  Talk to the teacher – talk to the principal.  No, these are not easy conversations to have, but you have to do it!

Drop in your child’s class/school.  If you are told this isn’t possible, do it anyway.  You have the right to see your child at any time.  If a school refuses to let you visit, that’s a giant red flag – always follow up on that!  Take someone else with you and go!  (if a situation gets tense, always take someone with you  when you go – a witness might be needed)  Climb the chain of command if you need to.  Schools want only the best for their students –  if a teacher is a problem, they want to know.  (at least, good schools do!)

You know your child the best.  If you get a weird vibe that something is wrong, don’t ignore it or assume you are just being over-protective.  So what if you were wrong?  You laugh about it and move on.  But – what if you are right and you do nothing?  Your child can’t help themselves – you have to do it.  Do whatever you have to do to make sure your child is safe.  You might realize he/she is only anxious because puberty is starting or they are going to go through a growth spurt.  Or you may save them from a traumatic situation.

Trust yourself.  Trust your instinct.

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Happy Mother’s Day to all Amazing, Awesome Autism Moms!

Happy Mother's Day to all Amazing, Awesome Autism Moms

Happy Mother’s Day, to all the awesome autism moms!   The one day of the year when you get to sit down, relax, have a cup of coffee (or a can of coke or glass of wine!), read a book, take a nap or watch an entire movie.  Wait – why are you laughing?   Honestly, I couldn’t even type that with a straight face.

To be honest, I had a completely different thought in mind for this blog earlier today and it just wouldn’t come out the way I wanted it to.  I decided to give up on it for a while and went to celebrate Mother’s Day and my brother’s birthday with family.  The cookout was going to be at a pond on the family farm.  I wasn’t worried about either of my kids going into the water (as much as Rob loves water, he won’t get his shoes wet – and so far, he isn’t willing to go barefoot at all!)  but I was worried about keeping him entertained and not getting into everything or singing his stress song at the top of his voice.

As soon as we pulled in, they both jumped out of the car and ran to the gathering.  Rob was amazed to see the dock over the water and immediately sat down to watch the water.  He was even more excited to see my niece and her cousin in a paddle boat and I knew he wanted to go for a ride.  He didn’t say anything about it, though, so I let him watch until after we had eaten.  The roughest part of the evening was his discovery of a pile of magazines he was bound and determined to get.

I told him no magazines.  He tried to “sneak” past me.  (He doesn’t seem to realize his sneaking skills are severely lacking – and he’s 5’10”!)   So I used my stern mommy voice and said no magazines, yes boat ride.  That finally got through to him, but he was still thinking about them.  We got him into the paddle boat and within a few seconds, I could see his anxiety levels dropping.  He paddled as hard as he could and then just stopped and we floated.  He put his fingers in the water and talked about fish and turtles.  I was shocked that he put his hands in!

It was as we were floating around that it occurred to me what I really wanted to say today.  What other people might see as little victories mean the world to me – and to every other mom (and anyone who loves someone with special needs!).  That’s what I want you all to celebrate today!  Yes, your life may  be harder than someone else’s – but it isn’t as hard as other people’s.  There are times I get so tired of doing baths/showers every night and I get grouchy about it.  But – then I think of the people who have to use lifts to get their loved one into a bath, if they can even do that.  I think of the parents who would love to be giving their child a bath every night, but can’t.  It’s all in perspective.

Give yourself permission to be whiny at times.  We all do it, but the guilt autism moms (and dads!) feel at being tired of things keeps us from talking about it.  Talk about it, anyway.  Brag to everyone about the smallest steps forward your loved one makes – if someone isn’t excited for you, ignore them and brag to someone else!  You have every right to brag, too!  You are a proud autism mommy – show the world!

When I share our story, I try to tell you how our lives really are.  Casey and Rob have had so many issues they had to deal with as children – and as adults.  I don’t sugar coat anything.  For a while, life was hell.  Some days, Casey screamed the day away.  I couldn’t figure out how to help her – and how to be a good mommy for Mandy and Rob, too.  I hated that I wasn’t a good enough mom to know what to do for her.  I hated that I had to depend on a doctor that was two hours away to help me with ideas and medications.  But – look at her, now!

I write to give each of you hope.  Our kids change quickly – and we may never know why.  I’m still trying to figure out the changes in Rob, though I’ve mostly decided to just love every minute of it!  We went to Prom last Friday and he is smiling in nearly every picture – even wearing a shirt with sleeves!  He danced the Twist with us and tried the Cotton-Eyed Joe.  The moment that brought tears to my eyes was when he slow danced with me, then Mandy.  He put his hands on my shoulders and swayed back and forth.  It’s the first time he’s ever shown any interest.

Instead of wildly dancing (by that I mean she runs back and forth like a deer – flying low and leaping), Casey stayed right with Mandy and I and she danced like we were.  She tried to follow the line dances (she doesn’t know right from left, no does she care!) and mimicked what we did.  Another proud autism mom moment.  And that’s what my Mother’s Day is about.  Quick, fleeting moments that may not mean anything to other people, but that mean to world to me.

Rob let his fingers touch the water.  Casey sat politely and waited her turn to fix her plate at supper.  Rob rubbed the dog’s head.  Casey played in the gravel and watched the little boys with a smile on her face.  He paddled a boat and looked for turtles.  She got in the boat, even when she was scared of the water.  They both said good bye and thank you as we left.  Little moments.

I hope each of you enjoyed little moments in your day.  I was lucky enough to have all of my kids with me at lunch – to see my parents, my brother and his family, and my extended family.  I hope that each of you has a big support system that you can rely on.   I know that isn’t always possible, but remember that even if your “family” isn’t around or can’t understand, others will be willing to help you.  Family isn’t defined by blood – it’s those people who walk into your life and never leave.

So -Happy Mother’s Day to all the autism moms out there.  And to the dads who are doing both roles – and the grandparents.  Today is a day to celebrate little victories and all of your hard work in those small, huge steps.  I hope you get plenty of hugs – no matter how you get hugs!  They might be tight bear hugs, or forehead to forehead, or light squeezes, or just a lean.  However your child shares love – enjoy every precious moment!