Month: October 2018

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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 Really Bad, Terrible Day

For the most part, I do laugh about most of our “adventures in autism” but there is one day that will never be funny to me. You might think it was the day Casey was diagnosed – or Rob. No, those were tough days to hear about autism but our really bad, terrible autism day happened in February when Casey was 6, Mandy was 3 and Rob was about 18 months.

Casey was in Kindergarten. Mandy was going to the preschool that Casey had attended. Two days a week, as soon as Casey got off the school bus, we loaded into the van to go get Mandy. This was our routine and it was fine with Casey as she loved visiting her old school.

On that day in February, a snowstorm was predicted for the next day, so I decided to stop and grab some milk on the way home from picking up Mandy. Casey was happy in the van, until we turned into the parking lot. She didn’t start screaming then – she just made unhappy noises and I assured her we were not going to be in the store long. I got everyone out of their car seats, kept Rob in my arms and grabbed Casey’s hand while Mandy took her other one.

The closer we got to the store, the more Casey got worked up. She was chanting “Barney! Barney!” but still in control. (Her routine was to watch Barney the Dinosaur when she got home from school.) When we walked into the store, she dropped and the screams started. I had to put Rob down to try and reason (what was I thinking???) with her. Rob was thrilled and toddled off. I had to send Mandy (remember – she was 3!) after him because I couldn’t leave Casey who was blocking the entire doorway and showing no signs of ever getting up.

Her screams echoed through the store. I’m sure people were staring, but I didn’t have the time to look. I was sweating and so mad. I knew she was upset because of the change in her routine. I knew she probably couldn’t help it. I simply didn’t care. I just wanted to yell back at her to get up and get in the cart and stop screaming. I was shaking. I was furious. And I knew that I was the world’s most terrible mom for being mad at my child with autism.

Rob and Mandy were having a great time running around. Mandy was dragging my purse because I couldn’t hold onto it and try to get Casey up. She was throwing herself around and kicking and I couldn’t get a grip on her to pick her up. And I swore to kill that stupid purple dinosaur. (Okay – yeah, I know that wasn’t so reasonable, but you have to understand the state I was in.) I finally got a grip on her belt loops and picked up her as she screamed and kicked. Not one person stopped to ask if I needed any help.

Mandy saw I had Casey in my arms so she grabbed her little brother and ran to the door with me. (They were still having fun running!) I still don’t know how I got all of us across that parking lot. Casey was still screaming and kicking and I don’t know how many times I almost dropped her. God was watching over us – we made it safely to the van. As soon as she realized we were going home, Casey stopped screaming, looked at me, and said “Barney.” And I, being the calm rational gal I am, said “Nope, no way! You are never watching that damn dinosaur again!” (Yeah, not my finest moment. I still feel terrible.)

When we got home, Casey ran right to the TV for Barney and I turned it off. (again, not my finest moment – what can I say? I wasn’t thinking straight) Casey, of course, hit the floor screaming and I started crying. I called my mom and cried and yelled into the phone. I swore she would never, ever watch that damn show again. I cried that I couldn’t do this anymore. I was done. Finally, my venting was over and I just cried. I was exhausted. My mom kept telling me this was just a bad day and that we would be okay. I didn’t believe her and told her as much.

Casey finally wore herself out and fell asleep on the living room floor. I hung up the phone and laid on the kitchen floor. I was too tired to get up. I was too tired to care about moving. I heard Mandy and Rob playing and closed my eyes. I ..kept praying the same thing over and over “Please, God, give me strength. I can’t do this.”

Of course, after some sleep, I knew keeping Casey from Barney wasn’t fair. She watched him later that evening (and she still watches that silly show!).

That day still makes me want to cry. I can still remember how I felt sitting on the kitchen floor. I know how tired I was. And I know we made it through.

I don’t share this story for anything other than to show that your terrible days will pass, too. I know how exhausted you are. I know you are just done. I know you sit on your kitchen floor and cry in the phone. But I also know you are stronger than you think.

When you have days like that, go easy on yourself. Yell, cry, pray – whatever you need to do to get through that moment and on to the next. Take a deep breath – slowly in through your nose and out your mouth. Let go of the guilt you may feel over not being the mom/dad that you think your child needs. Your child needs you. Simple as that.

Look at us. We had dark days. We had days that lasted weeks (and still do, at times). And Casey and Rob are both happy. They are doing so well. Her doctor even suggested decreasing one of her medicines and see how she does. They enjoy their lives and being with people they love.

You can do this. I promise.

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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.