Tag: autism and families

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Autism and the Tough Questions

Autism and the Tough Questions

Several months ago, I had to meet with a lady from our county board of DD about Casey and Rob’s waivers. She had pages of questions and I answered each the best I could, but …. I’ll admit, some of the questions hurt. I am constantly amazed by how far Casey and Rob have come since they were children and having to answer questions about their abilities wasn’t easy.

I know they need constant care. I know they need help with many things. I know they have no sense of danger. I know it isn’t safe for them to use appliances without total support. I know they can’t handle money. I see this stuff every day.

But – those questions were tough.

I know the questions were necessary to get Casey and Rob the support they need. I know that it was important. And I know I cried when it was over. It was a huge reminder of how much support they do need.

To me, they are just Casey and Rob. I know he needs help turning on the water or he’ll burn himself in the shower. I know she can’t wash her hair (we recently discovered that if Casey can’t see her hands, she can’t control them very well, such as to wash and rinse her hair.) I know when he’s anxious – I know when she’s getting overwhelmed. It’s just life to me.

When it came time to redo their ISP’s, it was even tougher. The ISP is supposed to be detailed enough that a complete stranger can read it and be able to care for Casey and Rob. I understand the idea and it’s probably a good one, but really? It would take a hundred pages of notes for me to tell anyone they schedules, their needs, their triggers, their anxieties, their likes/dislikes, their routines. But, I did the best I could and laughed to myself. There is simply no way anyone with autism can be contained to a form.

And when I do figure out their routines, they change. Just ask any parent who stocks up on their child’s favorite must-have food, only to have that child decide they no longer want it. Rob has done that to me many, many times. Luckily, he usually comes back to wanting that food.

It’s hard for any parent to see the delays their child has. It’s hard to sit and listen to everything they can’t do. It makes you question every decision you made – would they be better off today if I had done this or that?

But sometimes, the tough questions make me proud. Yes, Casey and Rob need constant supervision and support in all areas of their lives, but you know what?

They are happy. She is experiencing things and going places that even five years ago, I wouldn’t have believed. She will be singing in a talent show later this week (I cannot even imagine standing on a stage and singing to a crowd – that’s terrifying to me!) She went to a college football scrimmage over the weekend. He is venturing out of his comfort zone (With people he trusts) For the most part, their anxiety is under control. And we know how to alleviate their sensory needs.

So my advice to you is to let those tough questions remind you just how far your child has come. Yes, it hurts to hear the delays, but think back to other meetings and remember that the delays that were important then are the ones your child has overcome. Every small step forward is a reason to celebrate and be proud!

No one can tell you what skills your child will learn. No one can predict the future. Please don’t let the tough questions bring you down. Keep dreaming and reaching for the stars with your child!

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Autism and the Circle of Friends we Need

Autism and the Circle of Friends we Need

I’m not worried about taking Casey and Rob many places anymore. I’ve gotten that tough skin and can usually ignore anyone I need to. (Yes – I have days that the comments bother me, but not as often as they used to.) But – it’s still so much fun to have an outing with a group of people who completely “get it.” They know autism like I do and nothing any one in our families does bothers anyone else.

It’s an amazing feeling.

Yesterday, we went bowling with our autism support group families. There were about 30 of us and it was so much fun. The bowling alley was so accommodating for our needs and gave us extra space so no one would have to wait long for their turn and even asked if they needed to do anything about the lighting.

But the best part was watching Casey and Rob and everyone else have fun. When a child laid on the floor, no one cared. When Rob yelled to hear the funny echo, no one cared. When one wanted to tell everyone else how to bowl, no one cared. And they all cheered for each other. I’m sure the whole place could hear us cheering for each bowler.

I did have to remind Casey and Rob when it was their turn, but really, I could just stand and visit with the other families or take pictures. Or just soak in the fact that I didn’t have to care if anyone made loud noises or was humming or rocking. I could just relax and laugh the time away.

I have shared many times that I think you should take your child wherever you want to and learn to ignore the comments of people around you. Your child has the same right to be anywhere that everyone else does. But – it’s also so important for you to have a group of friends who completely understand (Well, as much as anyone can, since everyone with autism is so different!) what your life is like.

It’s important for you and your family to have those times when you can just be a family and not the “special” family. It might be hard to find other families like yours, but it’s so worth it. We are extremely lucky that our small town embraces our families for the most part and places are willing to host events for us, like our sensory friendly movies and pool parties.

Try to connect with other families in your child’s class. Join a support group (Or start one if you can’t find one). Talk to movie theaters and see if they would be willing to do a special movie and let people know it’s happening. It’s easy to do – especially with social media.

I know it’s hard to join a group, but I also know that no matter how many close friends you have, friends with special needs children are important and will completely enrich your life. They will have ideas and advice for you that no one else can give and are perfect to bounce ideas off of.

Yesterday was so much fun. I hope everyone that was there knows how special they are to me and how thankful I am that they came and had fun with us. I can’t wait for the next event!

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Autism and the Love of Simple Things

Autism and the Love of Simple Things

I’ve been struggling with what to write about for a few days.  I found my topic with the last ten minutes by talking to Casey and Rob about what they would like to do this summer.  They taught me a lesson – again.  I want to be more like them.

I’ve been thinking about trying a few long weekend trips – to a beach, to the mountains.  Maybe Niagara Falls.  Trying to work out details in my head for what sometimes seems like impossible trips.

But when I asked Casey what she wanted to do this summer, her answers were simple.  Go hiking at Mohican (a state park). Go to a mall.  Sleep at Grandma and Grandpa’s house.  See fireworks. Have a cookout. Tie-dye shirts.

Rob wants to go hiking with Tracie. Ride in Cory’s truck. Go to a car show. Sleep at Grandma and Grandpa’s house. Go swimming with Mandy, Andrew and Tory. Go to Steak -n- Shake.

Simple, easy ideas. While I think they would both enjoy a few days away, that’s not what they dream about. They both stick to simple plans and are happy to do that.

I want to be more like them. I am, mostly. I love hiking (assuming I can walk by summer!) and going to the pool. But – I think about lounging on a sandy beach. Or wading in a mountain stream, too. I’ll admit – I get jealous at times at how easy it is for others to decide to go on a vacation and just go.

I try not to be, but sometimes, it happens. I wouldn’t be human if it didn’t.

On the other hand, my life revolves around a simple routine. One that makes us all happy. We aren’t constantly running here and there. Tonight, we had plenty of time to sit on the patio together and enjoy this gorgeous day.

Casey is swinging and giggling and talking about Kylie and Julie. Rob is just completely relaxed in a lounge chair watching the clouds and the birds.

Autism isn’t always this easy, but if they didn’t have autism, would I have evenings like this? Would I be too busy following a crazy schedule to appreciate just sitting?

I don’t know. I can’t imagine my life any way besides this. We are happy. We are healthy. We are together. What more can any mom want? I’m going to be more like them and look for the simple things in life.

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Autism and my Christmas Wish for You

Autism and My Christmas Wish for You

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

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

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

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

With hugs and love,
Jen

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Autism and the Toughest Judge of Me

Autism and the Toughest Judge of Me

Don’t deny it. At some point in your life, you have judged someone. Whether it was for their choice of jobs or love or clothing – you have done it. I’m not proud of it, and I am working hard at not doing it, but I have judged others. I’ve heard judgments others have said about me. Before we go any farther, let me say – nothing anyone can say about me will be a surprise, I don’t particularly care what they think, and I’m tougher on myself than anyone else will ever be.

I made a lot of mistakes as far as autism goes. There simply wasn’t a lot of information when Casey was diagnosed so, for the most part, my expectations for her were the same as if she was typical. In some ways, I think that helped – it never occurred to me that she couldn’t be potty trained, so we never gave up. It never occurred to me that she might not be able to use forks and spoons properly. It was a struggle, but we kept going. I’ve often thought that if I had read some of these really scary books before she was diagnosed, she wouldn’t have come as far as she has.

Why wasn’t Rob diagnosed as early as she was? Simple – he was completely the opposite of her. Even our doctors weren’t concerned. He had almost constant ear infections and they attributed his lack of speech to those. He didn’t have meltdowns or sensory issues or the desperate need for routine she did. He simply didn’t say much. (he also had Mandy – she talked for him for years!) Didn’t I know he might have gotten more help if he had been diagnosed? Well, duh! But – his lack of speech put him in the same preschool/speech program that Casey went to. An earlier diagnosis wouldn’t have helped much.

The list of why I did what I did would do on for miles. I don’t owe anyone an explanation for my choices. I second guess myself enough.

Was I too lenient on them when they were little? Maybe I didn’t expose them to enough new experiences. Maybe I should have made Rob try more things. Maybe I didn’t handle Casey’s meltdowns the right way. Maybe I still don’t. Maybe I shouldn’t have given in to his need to wear certain types of shirts. Maybe I should have tried to break her routines. Maybe I set the routines myself because it worked. Maybe I didn’t work with them enough when they were in school. Maybe I should be working with them more now with speech.

Maybe I shouldn’t be telling them when to go to bed? After all, they are adults. Maybe I should make them do more around the house? (they both have chores they do, but I’m sure it could be more.) Maybe I’m not doing enough to help them lose weight? Maybe I don’t engage with them enough?

See? The list goes on and on. I know, at times, I have over-reacted to things that have happened with Casey and Rob. Honestly, when I’m tired, the smallest thing can be the last straw. I don’t really like being the parent everyone dreads to call with bad news. But, it is what it is. I apologize when I need to. I don’t when I did nothing but defend Casey and Rob.

I’m sure other parents are like me. It doesn’t matter what you think – they are already tougher on themselves and their choices than you will ever be. I can sit here and think “I would never…” forever, but I truly don’t know what I would do if I lived in that person’s shoes. You don’t, either. You can say, “I would never let my child meltdown in public.” but if your child has sensory issues, it will probably happen. Maybe, instead, you should think “Thank God my child’s senses aren’t as affected by autism.”

You can say, “My child would never be allowed to be up all night.” Maybe, instead, you can be grateful that your child sleeps. “I would never let my child be aggressive.” Be thankful you don’t have to deal with this – thousands of families live with this every day. Instead of judging other autism parents (or anyone!) be grateful that you don’t have to deal with what they live with every day. Every person with autism is unique and so are their families.

I’m not sure why we feel the need to judge other families. Maybe to make our lives seem better? Our parenting better? Whatever the reason, we need to stop judging and start being grateful for our own lives. Trust me – someone always has it worse than you do. I know I’ll never live up to my own expectations – I definitely don’t need someone else pointing out what I’ve done wrong.

Be supportive and be thankful.

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Autism and Hope – Never Lose It!

Autism and Hope

Anyone that follows our Facebook page may have seen that Casey sang in our county board of developmental disabilities talent show a few evenings ago. She won one of the awards – she was happy about that, but for her, just the singing is enough. And that she got a milkshake after! 🙂

She was so excited that she got to buy a new shirt to wear. That night, she couldn’t stop giggling at supper and kept looking at me for the signal that it was time to take a bath and get ready to go. We had to blow her hair dry and use “fluffy” stuff (mousse) in it. She couldn’t stand still from excitement. Even Rob was excited about going!

When we got to the school, Rob chose their seats and Casey bounced in her seat to watch people come in. She was going to be the last one to sing before intermission. Mandy and Cory came and she bounced harder. (And Rob had to jump up and rub Cory’s face – he had shaved his beard! 🙂 I’m still waiting for Rob to tell me he wants his face like Cory’s!

I was taking pictures for the newspaper, so I wasn’t sitting with the kids. As I watched the other performers, I kept checking on them and they were always looking right at the stage and enjoying the music. When Casey’s turn came, she jumped up and ran to the stage with a big smile on her face. She grabbed the microphone and looked at me as she waited for the music. As soon as it started, she started swaying back and forth and got really serious. This year, she really belted out her song so everyone could hear.

It’s funny. She loves singing on stage but those who know her well can see her nervousness. She doesn’t know what to do with her free hand and it moves constantly from rubbing her shirt to playing with the snap of her pants to going in her pocket. She loves what she is doing, but she is scared, too. And is brave enough to do something that scares her because she loves it so much. I wonder how many “typical” people can say that? How many of us really want to try something we love, but we are afraid to fail so we never try? Those performers that night were afraid – and they did it, anyway. They had all some type of disability, but they conquered their fears to try. We could learn something from them!

When she was finished, she didn’t wait for the applause. She smiled a beautiful smile, ran down from the stage and back to her seat – still excited and happy. And thinking of the milkshake she was sure she would get when it was over.

When they started announcing the winners, she was still smiling. I truly don’t know if she cares about winning (I know some of the performers do) but she was happy to go get her award and show everyone. She loved being in pictures and couldn’t stop smiling. I still think some of that smile was knowing that a milkshake was coming.

Later that night, after we had all settled down, I thought how far she had come. I know I tell you this often, but never, ever give up on your children. I don’t care how old they are or how severely they are affected by autism. You never know where they might go!

Who could have known that the little girl who screamed for hours at a time and beat her head on everything would one day be standing on stage singing a song she loved? The little girl who couldn’t sit in a gym with a crowd of people was now sitting in a huge crowd. That sweet child who couldn’t wait 10 seconds for help without screaming sat for 45 minutes waiting her turn to sing. The child who had only a few words was singing. (Though, to be honest, she was singing as a toddler, even when she couldn’t say Ma-Ma.)

And Rob…. he hates crowds. As a child, he had to have head phones on to be near crowds of people. He couldn’t wait for things to start as his anxiety would get to be too much and he would run away. He hated flashing lights and loud music. He paid little attention to Casey (even thought he followed Mandy everywhere – and still does! 🙂 ) He is learning to message people. He wanted to be there for Casey – to cheer her on – to hear her sing.

And I cried happy tears remembering. I remember the dark days when I was sure my life would be nothing but screams and bruises and anxiety and sleepless nights. I didn’t really have the time or energy to dream for either of them. I was too busy dealing with schools and IEP’s and therapies and everything else life threw at us. I didn’t give much thought to the future – or at least. not much farther than the next year’s IEP.

I know that your child may never sing on stage or sit in a crowd. (Honestly, Rob only did this for Casey!) He or she may not have a picture in an art show. But – your child may be the one to write the music – or the book – or the movie. Or they may the one to design a new bridge or a computer game. The point is – you don’t know what the future may hold. It’s hard to look ahead when right now is exhausting you. I get that. I really do.

I’m just asking you to not give up. Dream for your child when you can. Plan for your child every day. Sometimes, it’ll be one small step forward and three steps back. I get it. Don’t lose your hope – your faith. I’ve been told before to “fake it till you feel it” and it does work. Make yourself dream and feel hopeful. And maybe one day your child will be the one singing “You’ve Got to Stand for Something” in front of her family and friends. 🙂

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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 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.