Category: autism acceptance

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Autism and the Freedom to be a Perfect You

Autism and the Freedom to be a Perfect You

So many times, it seems parents are looking for a “cure” for their child’s autism. Or parents are crying about how terrible their lives are with a special needs child. I’m not in any way denying life with autism is difficult at times, but typical kids can be rough to raise, too! It’s all in your perspective – whether you are a glass half- full or half-empty, I guess. To me, life can always get worse.

On bad days, I try to keep telling myself that things are not as bad as they are for some families. My kids can do a lot of personal care themselves. They are sleeping (right now, anyway!) and eating a lot of different things (though Mr. Picky stills pops up once in a while! 🙂 ). His anxiety levels are under control and her meltdowns have mostly disappeared. Yes, I get tired at times and I get frustrated that we can’t just go places without a lot of planning. But, I wouldn’t change Casey and Rob. Their autism is part of them – just like their eye and hair color.

I do understand parents who wish there was a cure. I just don’t agree with them. I know they are tired – are frustrated – are angry at the world. I get it. I’ve been there. When there were issues at school, I just knew we weren’t going to make it through without my having a breakdown or exploding. I also know that if Casey and Rob didn’t have autism, they wouldn’t be the awesome, amazing, wonderful people they are. And I wouldn’t be the person I am.

Maybe, if they didn’t have autism, they wouldn’t have their artistic abilities. Maybe Casey wouldn’t have her beautiful singing voice – or if she did, she would be afraid to use it. Maybe they would find jobs that they didn’t like. Maybe they would fall in with the wrong crowd. Maybe we wouldn’t be as close as a family. Maybe they would find jobs they aren’t happy with. Maybe… Maybe… Maybe…. Maybe their autism is the reason they are happy. How can I wish to change that? Isn’t that every parents’ biggest wish for their children? To be healthy and happy?

It’s hard to watch your child struggle with difficult things – whether it’s playing sports or learning to wear new clothes, trying to talk or trying to learn long division. Having your child “cured” of autism won’t change that. They will always have obstacles that you will want to help them over – and that you will cry as you watch them struggle. Autism isn’t causing that – life is.

As we walked with Mom today, Casey and Rob got farther and farther ahead of us. Rob knows the path and off he goes. At every turn on the path, he turns to make sure we are still coming. He may be independent, but he still needs reassurance. Casey stays between us – he won’t let her get in front of him. They wander around the park together and I follow behind, thinking about how a few short years ago, I would have never let them get that far from me – for their safety and my sanity.

I had to learn to let them be free – to grow into the amazing young man and woman they have become. If I stayed too close, they would have leaned too much on me and not become who they are meant to be. Giving them freedom is so hard! (I think it’s hard for most parents!) They had to learn to take care of themselves in some situations and learn to ask for help in others. If I kept them too close, they wouldn’t learn that.

When we go walking, I let them wander a little. (Not too far, though – their safety is always more important than their freedom!) I let them try anything they want to and offer whatever supports they may need. You need to let your child try new things, too. You never know what hidden talents they may have!

I want all of my kids to have the freedom to be whoever they want to be. Autism or not, everyone deserves that. Just because they have autism doesn’t mean they don’t have their own dreams and wants. Those dreams may not be the same as people without autism, but maybe they are. You won’t know until you let your child try – until you decide that you have an amazing child who happens to have autism. You won’t be able to change that fact and the sooner you accept autism, the happier you and your child will be.

Cry if you need to (I sure do at times!) then think about how amazing your child is and learn to give them the freedom to be the perfect version of themselves!

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Autism and a Brand New Year

Autism and a Brand New Year

The end of a year is always a good time to think about where you have been, how far you have come and what you want in your life.

Where have I been? That’s a tough one. I’ve been stressed and angry to the point of tears. I’ve been so tired I can’t function. I’ve been stretched financially.

I’ve also been incredibly blessed. Blue came to live with us. Casey and Rob are making huge strides every day. I have a supportive, laughing, loving family. I have a best friend who more like a sister to me. This blog and our Facebook page are growing.

How far have we come? Farther than I could have ever imagined. Autism no longer defines me. It does shape us in many ways, but it’s not defining. (if that makes sense! ☺)

What do I want in my life? More chances to spread our story. To write a book. To be completely organized. To work out every day. To yoga more. More time with my brother. More time to craft and read. Less stress and tears. A plan to figure out how to do all of this without quitting my job. ☺

Casey and Rob always have such awesome perceptions that I don’t always think about, so I decided to ask them what they would like in 2019. (asking where they had been or how far they have come aren’t questions they would understand easily.)

When I asked Casey what she wanted from 2019, she said turkey and stuffing, to go to Grandma Rose and Grandpa Mack’s house, see Uncle Jeff and buy coloring books.

Rob wants to buy signs, go to McDonald’s, go swimming with Bob and Erin (aquatic therapy) and go to Salt Fork with Mandy and Cory.

He went to his room and came back. He wants to go hiking with Tracie and Casey added find a railroad tunnel with Tracie. (One of the state parks we hike at has a railroad tunnel we didn’t find last summer. ☺)

They didn’t worry about money, a better home or a better version of themselves. They wanted simple things that make them happy. A lesson we could all learn.

Every year, we seem to make resolutions to make ourselves better – lose weight, make more money, be this, be that. How many announce their resolution is to find simple joys? Let’s face it, sometimes, a life with autism is tough! Why add more stress trying to make improvements on you?

My resolutions this year are to find more laughs every day. To forgive people, if only to help me feel less stress. To hug more. To read on my porch swing. To praise more and critcize less. To find simple joys every day, write them down and put in a jar so at the end of 2019, I’ll have 365 amazing moments to remember.

My wish for you is the same. Find time for you – you can’t care for your child when you are burned out. Remember the things that bring you joy and look for them every day. Autism is hard. I know that. There are still joys to look for. Maybe it’s only 90 seconds to run to the bathroom by yourself – enjoy every second! ☺

Make this your resolution.  Don’t think you have to lose weight – think that a few minutes of exercise will relieve stress.  Change your resolutions into something easier to think about.  Don’t think about major changes.  Think about small steps – maybe clean out one closet as a step towards organization.  With autism, you don’t have a lot of extra time – so maybe just plan to find those precious few minutes every day just for you.  Minutes are there – you just have to be really creative to find them.  You need to do this – for your child, for your family, for you!

Happy New Year!

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Autism and a Different Looking Christmas

Autism and a Different Looking Christmas

As autism parents, we want to give our kids the same magical Christmas that typical families have. It’s a struggle, at times, but who decided what type of Christmas is the best?  Just because we do things differently than anyone else doesn’t make our holiday traditions any less special.

I just read an article about one family who gives their son with autism a gift every day for a week or so.  He can’t handle the excitement and the over-stimulation of Christmas morning, so they spread out his gifts over time.  He can enjoy each gift and not be overwhelmed.  They don’t have a big Christmas tree, as it’s not safe for him, but they have a tree in their daughter’s room, so she can enjoy it the whole season.

Unfortunately, I also read some of the comments from people about their arrangement.  I can’t understand why people are so negative!  We need to support each other and our choices, not tell them how to enjoy their holiday!  If that family is happy and it works for them, that’s awesome.  I’m betting that the people who made negative comments have a few odd things about their holidays, too!  🙂

We don’t have to go to that extreme here, but we also don’t go to a lot of parties or events.  I try to find things the kids would enjoy doing that doesn’t involve crowds (or we go at odd times to miss the people!).  Last night, we went to a drive-thru festival of lights about an hour from home.  Casey knew we were going and was up early that morning to get ready, even though she knew it had to be dark before we would see lights.  She seemed to enjoy it, but I’m not sure Rob liked it as much.  He was looking at lights, but he didn’t seem to care much about them.

The nice thing about the drive-thru light shows is we don’t have to worry about other people.  We can go early, before the lines of traffic get too bad and be nice and warm in our car as we look at the beautiful displays.  I can turn music on that they like and they can have snacks, if they want.  The zoo has an awesome light display and we’re thinking about traveling there soon.  Both of the them love the zoo, but with Rob fighting yet another ear infection/virus, I’m not sure walking around in the cold is such a good idea.

Casey wants to see Santa.  And go shopping for gifts for others.  And make cookies.  And go to the zoo.  And go to another light show.  And go to the Christmas dance.  And wrap presents.  And… and…. and….   Rob wants to go to the dance.  Period.  🙂   He does enjoy picking out gifts for others, but he doesn’t get excited about it like Casey does.  He’ll go when I say “Let’s go shopping.”  He’ll wrap presents whenever we get to it.  He’s pretty laid back about the whole thing.

Christmas Eve, we’ll open presents from each other.  I started doing this when the kids were younger to help entertain them that day while I was finishing getting ready for Christmas.  Then, I wanted them to understand who gave them what gifts. (My kids have to write thank you notes for their presents – old fashioned idea, maybe, but it’s important to show appreciation!)  When we did everything on Christmas morning, they couldn’t really appreciate their gifts.  So now, Christmas morning is just for Santa.

Casey is already talking about getting “up in da dark” that morning.  Last year, Rob got up during the night and ate snacks from his stocking while I slept.  He never touched the presents, but couldn’t resist the little can of Pringles in the stocking.  Casey rips everything open, yanks tags off of clothes and leaves it all piled on the couch.  Then she goes back to bed until she has to get ready to go to her grandma’s house for lunch.  Rob is slower at opening gifts and usually goes back to bed, too.

Often, when they get back from lunch, they take another nap before supper at my parent’s house.  Casey has such a schedule in her mind that I’m not sure she truly enjoys the day. (Autism and schedules can just stink at times!)  She is very serious about each thing we do and you can almost see her checking items off her list until late that evening, when her list is complete, and she can relax.

We don’t rush from place to place for days.  A long time ago, I learned it was so much more fun to take a nap on Christmas Day than rush around.  We have a very relaxed holiday here.  People are welcome to stop by and see us if they would like.  I’ll have snacks and cookies for guests.  But, really, it’s a quiet day.  They have plenty of time to relax between grandmas’ houses and are usually ready for bed right on time that evening.  (Of course, we have to stick with our usual evening routine, even on Christmas!)

The hardest part of my holiday is shopping for Rob.  Casey will give me a list a mile long – including colors and sizes – but this year was the first time Rob told me something he wanted for Christmas!  I was in tears when he said he wanted “Signs” for Christmas!  (And yes, he is getting several!)  He has never been able to answer “what do you want for Christmas?” before.  A huge step forward!!   I also buy him things most people wouldn’t really consider gifts – a huge box of crayons he won’t use, several packs of clay to cut up, packs of paper to rip up.  (Lots of sensory things to help with his autism anxiety!)  These things make him happy, so that’s what he gets.

There are so many things I would love to do around the holidays!  I have a list of places that we can visit that I think the kids might enjoy, but I have to stop and consider their needs, especially Rob’s.  He needs time to be at home, in his room, ripping magazines and just chilling out.  Casey needs that time, too, but she’s more likely to run and run and run and then have a meltdown.  Balancing their needs is difficult – especially at this time of the year.  Today, she wants to go shopping before they go to grandma and grandpa’s house, but he is having major anxiety issues, so that’s not something I’m willing to attempt.  She isn’t pleased with me, but she’ll get over it.  I hope without a meltdown.

Our Christmas won’t look like yours, but it’ll be special – just for us.  Just like every other family in the world, we do what’s best for us.  It may look odd to you, but running yourself ragged trying to do everything looks odd to us.   🙂   I hope each of you finds the perfect balance for your own special family!

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Autism and the Excitement of Christmas

Autism and the Excitement of Christmas

This time of year can be especially difficult for families with autism.  So many people with autism rely on schedules to function each day and the holiday season with all of the extra activities can throw anyone into a meltdown.  (Even a few “normal” people!  🙂 )   Casey used to have a really hard time each December, but now, she’s just excited about everything.  Rob takes it all in stride – he’s pretty mellow about things, but his anxiety can be higher when he doesn’t get enough downtime.

We started our season a few weeks ago by going to our town’s Christmas parade.  It had been several years since we went to one as the kids are usually at camp that night.  Casey was beyond excited – she was going to see Santa on a fire truck and couldn’t stop giggling about that.  Rob was happy to go because Casey was happy and Mandy and Cory were coming!

He even put a hat and gloves on (mostly because Casey did!) and sat quietly under a blanket while we waited.  He did let out one yell, but when Cory reminded him he was hurting ears, he settled down again.  He was happy to sit and watch all of the lights – until one of the trucks pulling a float blew an air horn!  He jumped a foot and covered his ears as tightly as he could.  It has been years since I’ve seen him affected so strongly by a noise (I’m wondering if the ear problems he has had this year could have contributed to him being more sensitive to sounds) and I felt terrible.

Rob tensed up every time a truck came near us.  Mandy and I took turns covering his ears for him so he could relax.  Unfortunately, the excitement of seeing Santa was dimmed for him by the realization that there was an entire line of fire trucks coming towards him.  He loves fire trucks, but was so scared about the air horns blowing unexpectedly that he couldn’t really enjoy it.

Casey, however, was almost bouncing in her chair!  Santa was coming!  And he waved to her!  She couldn’t take her eyes off of him and the smile on her face was priceless.  She watched until she couldn’t see him anymore and asked if she could go talk to him soon.  (That’s on our list of fun things to do!)  I told her we would go to the mall and see him.

The day after Thanksgiving, we start decorating for the season.  Boxes were everywhere and Casey couldn’t wait to get her tree up.  I told her she needed to put her laundry away first and she did it in record time.  Their trees were up and stockings hung in their rooms.  They both love going to sleep with the tree lights (pretty and calming!).

We have a list of places we want to visit during the month.  Drive-thru light shows are always a great way to spend an evening (Never have to worry about the weather, crowds or anxiety!) and I’ve found a few new ones that we’re hoping to make it to this year.   Several of the zoos in the state do extensive light decorations, too, so that’s another option.  Casey just can’t wait for all of it!  She is constantly bringing me her calendar to ask for specific dates for activities.  It’s hard for her to understand that the weather is a factor and some things can’t be planned too far in advance.

One of the decorations that make our home special is the picture with this post.  Look carefully and see that Baby Jesus is being guarded by a Teenage Mutant Ninja Turtle.  Rob got this turtle years ago in a McDonald’s Happy Meal and insisted that the turtle watch over the baby.  Every year, he looks for the turtle and places him near the baby in one of our nativity sets.  Rob kneels down and makes sure the turtle is in just the right place and that’s where it sits until I pack away the set for the year.  Rob checks each time he walks through the room to be sure the baby is still being guarded.

We stick with family gatherings and are so lucky that our family understands that Casey is deadly serious during the parties until the checklist in her head is complete.  First, you have to eat, then open presents, the take a family picture, then play games.  And when the games are played, she can smile and laugh because she is happy that everything was done and was just like the year before.  Rob joins in for parts of the party, but he also escapes upstairs to a dark, quiet room when he needs to.

I have a lot of ideas in my head of things I want to do during the Christmas season.  At times, it’s hard to balance what I know Casey would love with what Rob would enjoy.  She went to see The Nutcracker last week (my niece dances in it every year) while Rob stayed with me.  She wants to see Santa, while he probably could care less.  (She firmly believes in Santa – Rob will believe because she does, but I’m not sure he truly does.  He just won’t ruin it for her.  Empathy at it’s finest!)  She wants to make crafts and he might join in for a little while, but it doesn’t really interest him.

She wants to bake cookies.  He doesn’t care for them.  They both like to shop for presents for others – he tends to be more serious in his choices.  She knows who she wants to buy for and will grab anything at times so she can be done and look for things for herself.  They both love to wrap their gifts and watch people open them.

It’s also hard to balance what I want to do with what is best for them.  We can’t do too much in the evenings that may disrupt their night schedule or they may not sleep.  Long days away from home make it hard for Rob to relax when he gets home, so how far we can travel is a big factor in what we do.  You will have to try to balance what you want to do with what is best for your little one.  Even if they enjoy the activity you plan, will they be over-stimulated to the point that anxiety gets too high?  Will they be able to calm down when you get home?  It’s exhausting to try to think about all of the “what-ifs” when you plan something new!

While it may seem easier to just stay home, what if you tried and it went perfectly?  What if everyone has fun and you create memories that you never thought you would have?  You have to give your child a chance to be successful – even as you dread the possible meltdowns or stares from other people.  You will never know until you try!  Take those baby steps and venture out!  I know Casey and Rob are constantly surprising me with what they are able (and want!) to do now!

Start your own traditions for the season.  Your ideas may seem odd to others, but who cares?  They are for your family – your children.  Take drives to look at lights.  Make some gifts.  Bake.  Decorate as you need to.  Buy the comfy clothes your child needs to enjoy a party.   Try to relax and enjoy special events.  Find a babysitter (yeah – not easy, I know!) and leave your little one at home if you truly know they won’t enjoy what you are going to do.  (Let go of that guilt, too!)

I hope your holiday season is full of excitement, fun, love and laughs!

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Welcome to our Loud, Crazy Autism Home

Welcome to our Loud, Crazy Autism Home

Yesterday, I came across a meme created by Joy of Autism  (if you haven’t checked out her page, yet, you are missing something!) about welcoming people into her home – and reminding visitors that their home is her son’s safe place, to truly be himself.  I shared it on our Facebook page and was surprised at the response from everyone who saw it.

When we are at home, Casey and Rob are free to be themselves.  While I do remind Rob to use a quieter voice, at times, when Casey is trying to sleep, for the most part, I let them be.  They do so well at holding it together every day while out in the world – they need to be able to come home and just relax.  I do the same thing.  It’s usually only a few minutes after I get home that I’ve got comfy clothes on and I’m ready to chill for a little while.

Visitors to our home know that Rob may be singing his anxiety song or fairy dancing through the house.  Casey might be stomping her figure eights upstairs and trying to sneak into the refrigerator.  They know that I’m glad they are visiting, but I’m also always aware of what the kids are up to – that I may jump up at any time and go check on them.  Strangers who visit for the first time can either accept that or leave.  This is OUR safe place and we make no changes for others.

I remember when they were little and Mandy had friends over.  Whenever Rob took his shower, she would make sure her friends were safely upstairs, as modesty was never Rob’s strong suit.  Now, he wouldn’t dream of leaving the bathroom with no clothes on, but he may venture out without completely pulling on his pants.  We’re used to it, so if we do happen to have company, I try to position myself to block any view.  (He comes right to the kitchen for his pills and snacks after his shower.)

Casey could care less who sees what.  I have tried over and over to remind her she needs to be dressed when she leaves the bathroom, but if she got her weekend-after-bath slippers instead of her weekday-after-bath slippers, she’ll run to her room to make the switch.  (She has several classifications for slippers – and she refuses to wear a pair of slippers that aren’t right.)

So, when you visit, if I seem to be standing in the door between the kitchen and dining room and looking over my shoulder for a long time, I’m just making sure you aren’t treated to a sight you can’t unsee.   🙂   When we had the pool, Casey and Rob both would yank their bathing suits off on the back porch so they wouldn’t get the floor wet.  They never cared who might be driving by.

Rob might be ripping paper and rocking in his recliner.  He might be making noises that you can’t understand, but I do.   It’s okay if you admit you can’t understand.  It’s not okay for you to think I need to change him while you are here.  That ain’t happening.  Casey might be sitting on the love seat and playing with her iPad.  If she has it too loud, I’ll ask her to turn it down – but I won’t ask her to leave the room.

I won’t ask her to take the blanket off of her head so you can talk to her.  She’ll hear you just fine – say what you want.  I won’t ask him to come out of his room while you visit.  He’ll come out if he feels like it.  You are welcome to peek in and say hi to him, but know that he may not answer you.

It’s hard to let people into our safe place.  Any time someone new comes in, I am nervous, as you never know how people will react to autism.  I don’t think anything about it, but for someone who isn’t around autism, our routines and quirks can seem odd and not worth the effort.  (Our schedule is worth the effort – trust me.  Life without our routine is not fun.)  I can’t change our routine for you.  It’s simply not worth it to me.  At times, a slight change can keep the kids up for hours and I need sleep.

Other times, you may not notice anything odd about our home.  When the kids are having good days (and most are good!), autism isn’t obvious, unless you know what you are looking for.  On other days, you may see/hear the kids stimming to relax.  You may find their habits weird and that’s okay as long as you remember they are doing what they need to do to make sense of this crazy world.  You are welcome to ask questions.  You are not welcome to tell me how to change our world.  I will show you the door.

I’m sure that sounds terrible, but you knew about the autism before you came to our home.  If you have some experience with it and offer a few ideas that you have tried, thank you.  If you are nervous, that’s okay.  If you really want to know us, welcome!  If you are just nosy, go away.  We don’t need you.

Please, parents – let your kids be themselves – especially when they are at home.  I know you may not want some people to know just what your life is like, but really, what harm can it do?  If you are embarrassed, try to relax.  Your visitors should understand and, if they don’t, do you really want them around your children?  You are their protector, their advocate, the one they run to when they need help.

Home is their place to just be them.  We love to have visitors, but only ones who understand that we do live in a circus and we love it that way.  Accepting our wild lives is the best gift you can give us this holiday season!

 

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Autism and Bright Spots in Life

Autism and the Bright Spots in Life

This may sound odd coming from someone with two adult children with autism, but the last few weeks autism and its affects have been a big topic in our lives.  Sometimes, I think we are so used to our life and our schedule that we don’t really “think” about autism, but it’s been big news this week.  Actually, the big news has been that both kids have made amazing strides and are doing such cool things.  Autism isn’t winning this week at all!

Bright Spot #1 – Casey got to be Cinderella for their Halloween dance and wear her dress to the workshop the next day.  She had asked to be Cinderella for 2 months and couldn’t stop smiling as she got into her beautiful, glittery (ugh – i don’t do glitter at all!  🙂  ) dress.  She posed for several pictures before dancing at her “ball.”

Bright Spot #2 – Rob found a clown costume he wanted to wear. We had planned to be characters from Cinderella (Rob, Mandy and Cory were mice, I was the fairy godmother) but he wanted to wear this outfit so bad.  And it was a mask!  He has NEVER worn a mask before, but was so excited and giggled as he got dressed for the dance.  (I hate clowns – I mean, I seriously do NOT like clowns and this was a creepy clown mask!  But – he was happy!)  He only wore it for a while at the dance (he got too hot), but everyone commented on how cool he looked.

Bright Spot #3 – I had to take Rob to the ER Tuesday.  And no, that’s not the bright spot!  The bright spot was that even though he hates hospitals, strangers and new places, he was wonderful!  He sat quietly and waited, then let the doctor look at his ears, even though he wanted our family doctor.  He waited while the nurse got his meds ordered and then asked to go back to the workshop instead of going to Grandma’s house.

Bright Spot #4 – Casey passed out candy to the “widdle” kids who were brave enough to trick or treat in the rain.  She giggled and rocked back and forth as she watched them walk up to the porch.  She was so excited!  This was the first year we had tried doing this, as she as always asked about trick or treating and I wasn’t sure she would be ok with passing out candy and not going herself.  I’m sure some of our neighbors would be okay with her dressing up and trick or treating at their houses, but I have finally gotten her to understand she isn’t going, so I don’t want to do that.  She lasted about half an hour, then decided her iPad was more fun than more little kids.  🙂

Bright Spot #5 – Rob tried two new foods this week!  He didn’t like either of them, but he was willing to take a bite and try.  I think the pudding texture is just too hard for him, but he just didn’t like the crackers.

Bright Spot #6 – I picked them up early Thursday for Rob’s follow up appointment with our family doctor.  We had to wait over half an hour (a rare thing in our doctor office!) but they both sat so quietly and patiently in the waiting room.  He got giggly at one point and she was rocking in her chair, but in no way did they disturb anyone else waiting.  When we got to see the doctor, Rob answered his questions and showed him which ear was bothering him.  And then told him we were going to Hobby Lobby and the Dollar Tree.  And Casey added McDonalds!   (We had a really nice evening!  No anxiety song, despite the crazy, rainy weather and the change in his routine!)

Bright Spot #7 – They both volunteer at different places around town with staff from their workshop.  Friday, Casey went to a day care while they children were sleeping to clean toys.   Her staff was so excited, they called and told me all about how she smiled and carefully wiped every toy and the bin the toys were in before putting everything back quietly.  The pictures they shared are so precious to me – Casey has a huge smile on her face!  (And she didn’t even try to take any Sesame Street toys home with her!  🙂  )

Honestly, I needed a week of bright spots.  Life has been crazy busy and I’ve felt like I was just dealing with stuff and not really enjoying all the little moments that we all need to see every day.  I’m usually the kind of person to always look for the bright spots in every day.  I thank God for the happy little moments that we can all find each day if we look hard enough, but lately, even though I’m thankful for those little moments, I haven’t fully enjoyed them.

Today, as I write this, I’ve loved remembering each moment.  I look at the kids and think how proud I am of them – how hard life is for them at times, but they still laugh and smile about little things.  Like a new coloring book and a pack of clay from the Dollar Tree or McDonalds for supper.  A costume they love – seeing Mandy and Cory – going to Wal-mart with Mandy and having supper at their house.  Tracie is coming tonight and Casey can’t stop giggling about that.

And I know that they (and autism) have taught me so much more than I ever taught them.

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Autism and Please Just Ask your Questions

Autism and Please Just Ask your Questions

Tracie and I took the kids to Richland Carousel Park yesterday.  It’s about an hour and half from our house and none of us had ever been there.  The day was chilly and rainy and something indoor seemed like a good plan.  Casey and Rob both stim on carnival rides, so we were curious about how they would react with one that wasn’t quite as wild as what they usually liked.  Autism can give things such a different perspective.

Despite a few twists and turns (we didn’t know they were having a Halloween parade yesterday and a bunch of streets were blocked off!) we got to the park.  Casey was thrilled with the gift shop – coloring books to look at!  But Rob took one look at the carousel and he was ready to ride.

Tickets are very reasonable and I wanted them to really experience the ride.  Tracie and I each rode twice and the kids rode a few more times.  Their smiles were amazing and I knew we had found something they both enjoyed.  It was a little loud, so by the time they were on their fourth ride, I knew it was time to go.

We went into the gift shop to look around.  Rob had little interest in looking and was getting hungry so he was rocking and humming a little.  Casey looked quickly, but she was ready to go, too.  As we were walking to the door, a lady asked if she could talk to me a minute.

The carousel is having an event for special needs families and she wanted to invite us to it.  I told her that was awesome for them to do that and thanked her for the information.  Her next questions made me laugh, until I realized she was serious.

“Did I offend you?”

Offend me?  I’m sure the look on my face told her what I was thinking before I laughed and said no way.  Apparently, a woman had gotten really upset and told her she was offended when she invited that family to the event, so the clerk was a little worried about offending others by asking.

And that brings me to my point of this blog.  Seriously, folks, if you have half a brain and pay attention, it’s obvious Casey and Rob are special needs.  Maybe you don’t recognize autism, but you can tell they aren’t typical adults.  Please – instead of staring – ask your questions.  I won’t get offended,  I’d rather people were just honest instead of staring and making comments.  (By the way, if they are unkind comments and I hear them, you might meet Mama Bear!  😉  )

Please – don’t tell your kids not to stare or pull them away.  Let them talk to us.  The more you make it seem like it’s a bad thing to have autism, the more they will avoid some pretty awesome people.  Let them ask questions.  Let them smile and say hi.  Let them ask Casey about her Elmo shirt or Rob what song he is singing.

People with autism have a hard enough time fitting in at times.  If you avoid people with special needs, your children will learn to avoid them, too.  You may be uncomfortable, but that’s okay.  I’ve been uncomfortable many times and I’ve survived and made some wonderful friends in the process.  Ask me why he is rocking (to calm himself).  Ask me why she is holding my elbow and he’s holding my hand (for comfort in crowds.  Ask me why he is going into the women’s restroom with me (he doesn’t go  in men’s room unless it’s a one stall bathroom and I can wait outside for him!).

Ask me why he leans his forehead to mine (comfort and to show love).  Or why she giggles at crying children or angry people (she nervous).  Ask me why he is wearing sleeveless shirts in January (sensory issues).  Ask me why she is wearing two shirts when it’s 80 degrees outside (cause the calendar tells her to!).  Ask me why he is talking too loud (he doesn’t know it!).  Ask me why he is singing Long Black Train (anxiety).

Ask why she is 30 and carrying an Elmo around (cause she loves him!).  Or why he doesn’t answer your questions himself (he doesn’t talk to strangers).  Just ask.  We won’t bite you for asking, I promise.  We would much rather you talk TO us than ABOUT us.  Autism isn’t contagious – but kindness is.  Casey and Rob remember who is kind to them – who respects them.  And they will never forget.

Maybe there are some parents who aren’t ready for your questions.  Maybe they are new to the journey of autism or are having a really bad day.  Maybe they haven’t fully accepted their life.  Who knows?  But just because one person reacts negatively to your questions, please don’t stop asking.  We need acceptance and discussions – not your stares.  Our families are just like yours.  We want to visit places and go out to eat.  We want to go to the movies and we want to play miniature golf.  Please help us do that.

Your kindness and smiles will encourage us to try again if an outing doesn’t go as well as we hoped.  Even if we can’t smile back (if a child is in the middle of a meltdown, smile and ask the parent if you can help – and don’t be offended if they don’t want your help.  We deal with this every day – and in the middle of a meltdown, we are only thinking of getting out of wherever we are!), when things settle down, we will remember the sweet person who smiled at us.

So – ask away.  I’m always open to questions.  You can message me on our Facebook page or contact me on here.  I don’t mind discussing personal issues with you, but I won’t do it in a public way – only through email or private messages.   🙂

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Autism and the Questions I Never Asked

First, I have to say, the above picture is one of my absolute favorites of the three kids together. It has been hanging in my kitchen or dining room since it was taken – 14 years ago! I realize you can’t see the kids’ faces, but I just love that they are walking hand in hand and completely in step with each other on a beach that they love going to. Autism isn’t obvious, unless you know the kids.

That really is a snapshot of how they grew up. Mandy was in the middle and guiding Casey and Rob towards fun and safety. She never seemed to notice how different they were from her friends’ siblings or that her life was very different in ways, because of autism. The kids weren’t always in such perfect step together, but they were always together.

I am always bragging to people at how amazing Mandy and Cory are to Casey and Rob. There are so many siblings that simply have nothing to do with the person with autism and I thank God every day that my kids are close. I just can’t imagine the pain a parent would feel knowing that autism kept the family from being close. Mandy will say how great her childhood was and, in many ways, I think it was. But – there are questions I never asked her, because I am not sure I want to hear the answers.

Like – did she ever notice that we didn’t go many places as a whole family? Did it bother her that many times, she only had one parent at her school events? (yes, I know many children have only one parent at events, but I’m thinking just of her. 🙂 )

Did she ever notice that so often when we played Barbies or horses or Power Rangers that I never got too far away from the top of the stairs so I could hear what was going on downstairs? Did she notice that I was distracted as we played some days?

Did she feel left out when Casey and Rob went to therapies? I know she didn’t like that they had horse therapy, at first, because she so loved horses and she wanted to ride, too. When she got a little older, she volunteered with the riding club, but I still regret that she didn’t get to ride when she was the one who loved horses so much.

Did she get tired of sharing a room with a sister who had meltdowns often? or who couldn’t sleep many nights?

I know there were times she was furious with Casey and Rob. There were times they took something precious to her and broke it or just got on her nerves. But did she resent the way I handled those situations? I could tell Casey and Rob not to touch things that weren’t theirs, but in reality, their impulsiveness overrode any words I could say. I never felt I handled those times right – I tried, but I don’t think she truly understood that I knew how upset she was – there was just little I could do, except cry and hope that she didn’t grow up to hate her brother and sister.

Did she notice how many times Casey and Rob’s needs had to come before hers? When they were little, I hoped every day that she would never feel like she wasn’t just as important as the other kids, but it was (and still is, at times) a worry I can’t shake.

Did she have plenty of time to just be a kid? And not have to help keep an eye on Casey and Rob as we played outside or ventured to a store? Did she have enough freedom to just be her – Mandy – and not their sister?

Did I make sure they all followed the same rules? I hope so – I tried – but I wonder, at times, if I was more lenient on Rob, because he was the baby, not so much because he had autism. I suppose that’s something every parent worries about, but when there is a special needs sibling or two tossed in, it’s even harder.

It seemed some days that my entire day was dealing with autism in one way or another. Those nights, I would fall into bed and feel so guilty that Mandy didn’t get the few minutes of attention I wanted to give her. (Autism mom/dad guilt just sucks, doesn’t it?) I hated that I couldn’t spend the whole afternoon playing games with her without constant interruptions from autism.

Did she resent it when I asked her to watch the movie Casey or Rob chose, even though it was her turn? It didn’t happen often, but some nights, I just couldn’t deal with the thought of another meltdown from Casey because her movie wasn’t on when she got out of the bath. Luckily, Mandy and Rob tended to be obsessed with the same movies (except Willy Wonka – she never got into that one like he did!) – like Wizard of Oz and the Power Rangers – at the same time. And even luckier, Rob did whatever Mandy wanted so he was happy with anything she chose.

Did she get tired of our routines? Or did she like that she always knew what was going to happen?

I know every parent has questions like this, whether there are special needs family members or not. This is just something I’ve been thinking about the last few days – I’m not sure why – maybe because I was looking at pictures from when they were younger and thinking about how many times Mandy had to jump in and help with Rob when Casey was having a meltdown. Or look for Rob when he climbed somewhere and we couldn’t find him. And those thoughts led to the questions.

Casey, Mandy, Cory and Rob are close now. While Casey loves Mandy and Cory, Rob takes that love to an adoration. He is still the same little boy who would follow his sister wherever she wanted to go (and I have pictures to prove it!) and now he follows Cory that same way. Now, I know she doesn’t resent her siblings, but when they were little? I’m sure there were times she hated autism – same as I did. I am sure she never hated Casey or Rob – just the actions that were caused by the autism.

I wish that every person with autism had a Mandy and a Cory in their lives – that every family could be as close as ours. Despite my guilt at not always being the mom I wanted to be for Mandy, I know how lucky we are to have each other.

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Autism, Discipline and Manners – Is it Possible?

Autism, Discipline and Manners

For the 5th time in just a few weeks, a parent told me that they never “discipline” their child with autism – that their life is hard enough without rules they need to follow.  HUH??   What exactly does that mean?

You read it right.  There are parents (both of special needs and typical children!) that no longer believe in teaching their children manners or rules.  They want to be the child’s “friend” and too many rules will make that impossible.  They believe no one else is polite, so why worry about their child’s manners?   And I’m sorry – I have the wrong attitude – but I wanted to smack them!  You don’t have a child to get a new best friend (but, if you are lucky, you do become that – through hard work, patience, laughter and love!)

I suppose, in a way, I was lucky that Casey had turned 4 before she was officially diagnosed.  I had certain expectations for her and taught those to her before I was told it would never be something she could do.  (Remember – this was 26 years ago – autism information has come a long way since then!)  I was told she would never be potty- trained, never talk, never be able to communicate her needs/wants, need constant supervision.  (I have since thrown away that first book I read – it was terrifying!)

Some of what I was told may have come true, but not much of it.  And through all of the books I read and conferences I went to, I continued to have expectations for her – the same ones I had for Mandy and Rob.  Sure, it was harder to teach her and Rob some things, but I never gave up.  I had to be creative at times to teach them to say please, thank you and excuse me.  I still have to constantly remind them to let others walk through a door before them and to share.

Sometimes, I have to remind them to say please and thank you.  But, that’s what a parent does – you constantly remind your child to act in a certain way.  You don’t give up because it is difficult.  You find new ways to teach them.  Because rude people are not accepted in society.  It may seem to be the norm, now, but it is not acceptable to me.  Autism does not mean my kids have a free pass to be rude little brats.   Nope, no way, not in my house.

Are they always perfect?  God, no!  Am I?  Nope.  Do I let things slide at times that I shouldn’t?  Yep – especially when we are having a hard day or we are tired.  Do I regret it?  Sure – but I’ve never claimed to be a perfect mom.  I do my best and let stuff slide – probably more often than I should, but some days, the little things just aren’t worth the added stress.

Yesterday is a prime example.  I wasn’t feeling well – Casey was in a mood – Rob repeated his anxiety song for almost 9 (yes – 9!) hours straight with no breaks.  By the evening, I didn’t care about how well they scrubbed themselves in the shower or how well their teeth got brushed.  We just needed it done with as little added anxiety as possible.

But, even at that, having autism doesn’t give them a pass on behaving themselves.  Autism causes certain behaviors and I would never “punish” them for those, but other things are not autism.  And I expect them to behave.  When they don’t, I correct them and explain in as few words as possible what they need to do.  Sometimes, saying “That’s bad.” is all I say.  If you say too many words, your child won’t be able to process what you are saying and you will be wasting your breath – and be right back where you started from.

Everyone has rules.  Your child may have autism, but they need rules, too.  You don’t leave the house.  You don’t climb to the roof.  You don’t jump off the roof.  You don’t leave with strangers.  You don’t hit others.  You have to wear clothes when you leave the house.  No spitting.  No running.  Hold an adult’s hand when you cross the street.  You will wear seat belts.  You don’t sleep at work.

Rules keep your child safe.  Will your child understand that?  Probably not.  Will it be easy?  Nope – you may never teach them some rules so you can trust them to do it.  (Look both ways before crossing a street is a tough one for us.  They both glance each way AS they are crossing the street.  It’s a constant battle, but one that I can’t give up on.  It’s a matter of safety!)

Being impulsive is a huge part of autism with some people, so not only will you be fighting the communication aspect, but also their own impulses.  You will get tired, but you have to do this!  You have to teach your child – you have to discipline them.  Imagine how your typical child will feel if they are punished for something, but the child with autism isn’t.  While I know life isn’t fair, that definitely isn’t!  It’s hard enough to have a sibling with autism without feeling as though they are more important or special than you.

Obviously, you will have to figure out what is autism behaviors and what is just being a brat.  Meltdowns from sensory issues cannot be helped, until you know what’s causing the problem and fix the issue – are their clothes uncomfortable?  Are they hot?  Cold?  Hungry?  Anxious?  Are the lights too bright or blinking?  Is it too noisy?  Is someone’s perfume too strong?  Always remember that meltdowns are NOT tantrums.

A child has a tantrum when they are told “no” or something is taken away they want.  Or when they are tired or hungry.  They kick and scream, but know exactly what they are doing.  A child with autism will kick and scream, but have no awareness of who is around them.  Casey never knew I was there until she started calming down.

You aren’t doing your child any favors by letting them do whatever they want at home.  You are making their teacher’s life miserable because, at school, they have to follow rules!   That teacher has enough to handle without the added bonus of a little brat with parents who refuse to believe their angel could be bad.

Autism or not, discipline and manners are important!  I know you are tired and stressed and don’t want to deal with anything else.  I’ve been there!  But, the sooner you start teaching your child, the easier it will be to continue.  Take a breather when you need to – don’t strive to be perfect.  A perfect parent simply does not exist.

 

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Friends without Autism – and That’s Okay!

Friends without Autism - And That's Okay!

Any one who lives with autism has probably made a comment about not having any friends who don’t understand autism.  I do understand that statement – and I’d never consider anyone a friend who was cruel to my kids or anyone else with special needs – but I think, sometimes, we are too hard on those who don’t live with autism.

I’ve written before about a special group of ladies in my life.  I don’t get to see them often (if you think trying to make plans with one person with autism is difficult, try 6 – 8!) but when I do, it’s as if we’ve never been apart.  We do talk about autism and how it affects every single, teenie tiny part of our lives, but that’s not the only thing we talk about.  And sometimes, it’s the not talking about autism that helps as much!

I don’t know about you, but sometimes, I’m tired of autism.  I am in no way saying I’m tired of my kids – I’m saying I’d like to make simple plans – or watch TV without “Long Black Train” being sung in the background – or be able to eat my supper while it’s still mostly warm (I’ve pretty much given up on hot meals!  🙂  ).  I want to talk about anything but autism.  I’m lucky – I have Tracie.  She’s used to the sound effects in my house (even if she giggles while I grumble!  🙂 ) and we can have a long conversation that would probably be boring to anyone but us.

And this brings me to my point.  Thanks to Facebook (if you ignore the drama and trash, it can be a great way to find old friends and stay in touch with far away family!) I’ve been able to reconnect with some women who were a huge part of my life many years ago.  Mandy and their daughters were in Brownies and Girl Scouts together and the group of us moms became friends.  We took the girls places and worked on the PTO together.  And we didn’t talk about autism.

I never hid autism from them, but when I was with them, I could just be Mandy’s mom.  I could be a Brownie mom or a room mother or a PTO volunteer.  I wasn’t trying to handle meltdowns or sensory issues.  I was simply laughing and enjoying being a mom.  After reconnecting on Facebook, I started thinking about how much fun I had during those meetings.

I’m sure there were days these ladies wondered about Casey and Rob – and I’m sure we even talked about it at times, but those moments are not the ones that stand out to me.  What I remember most was the fact that they were so supportive of me and how much they helped me when getting Mandy places was going to be difficult.  She didn’t have to miss anything because I couldn’t find someone to stay with the other kids.

Cathy knew a lot that happened in our house because she and I were close friends before we had kids – she and Tracie were some of the first people I told when Casey got her diagnosis.  And they were both with me as I worried about Mandy and Rob and whether they may eventually be diagnosed, too.  But when we were with this group, autism wasn’t the topic.  Just being a mom was.

Kristi, Rhonda, Cathy, Stacy and others didn’t live with autism.  They didn’t know much about it.   And they were my friends.  Being friends with them allowed me to just be Mandy’s mom and that is one of the most precious gifts they could have given me.  I hope they understood what they did for me so many years ago, but I doubt it.  We were just having fun.

So many people only want friends who understand autism.  I get that.  Life is easier if your friends accept your children.  I’m only saying that it’s okay to have friends who don’t “get” autism.  Let yourself just be you and not an autism mom or dad.  We don’t get many breaks from autism – don’t ignore those chances when they come your way.

I wouldn’t be friends with someone who refused to ever listen to me if I was having a hard time with the kids.  But because someone doesn’t understand autism is not a reason to never be friends with that person.  Some of my closest friends have never met the kids – we were friends as children and now distances keeps us apart.  Just because they don’t know Casey and Rob is no reason to discontinue that friendship!  Many times, during tough days, a text from one of them brightens my day more than they can imagine.

Sometimes, I just don’t want to talk about autism or what affect it has on us.  I just want to grumble about bills or laundry or the never-ending list of things that need done around the house.  I need friends who understand my life – who are a big part of the autism parts, like Tracie – and friends who understand, but don’t live it, like my awesome co-workers.  And I need friends who truly don’t have a clue, but they care about us.

Don’t believe the memes you might see that say only people who understand autism can be your friends!  Yes, they need to have compassion for those with special needs, but they don’t  need to live it.  Let yourself enjoy an “autism-free” hour or two once in a while.  You will be shocked at how much better you will feel.

Hopefully, each of you will have a huge group of autism and non-autism friends – a big group that supports and loves you and your children.  We need friends to call when we need a shoulder to cry on – and when we need to vent – and when we need to try and think through a new plan – and when we just want to talk about the latest episode of The Walking Dead – and a new restaurant we tried.  Don’t limit yourself to people who live with autism – you might miss out on a most amazing friendship.

And don’t forget about online friends.  Sometimes, people you will never meet become close friends, simply because for some people, it’s even easier to be completely open and honest with those who don’t know you.  The fear of judgement is gone and you can just be you.  Message me anytime!  🙂  🙂