Who Says People with Autism Can’t Feel Empathy?

Who Says People with Autism Cant Feel Empathy?

Raise your hand if you have been told that your child with autism can’t feel empathy or recognize emotions in other people.  Of course, some won’t be able to easily – but that’s true of “typical” people, too.  Some people just can’t understand how others feel.

Rob and Casey can both read emotions in other people.  Casey hasn’t always been able to as easily as she can now, but Rob has always read people.  He gets very anxious if he knows someone is upset – he seems to pull their emotions into himself.  When someone is angry, he hums, paces and rocks until they are calm.

When we go anywhere, Rob keeps an eye on Casey.  He grabs her hand and they stick close together.  Or they hold onto me – she holds my left elbow, he holds my right hand.  It’s hard to walk down aisles in stores sometimes, but I always know who is missing by which hand I can move freely.  When I pick the kids up from work, if he gets to me first, he asks for Casey.  If she gets there first, she is ready to go.  While she is always aware of where he is, he voices his concerns more.

Seeing people cry makes Casey nervous and she giggles.  She will lean towards the person and get right in their face.  I haven’t been able to tell whether she is trying to see if they are really upset or if she is trying to help, but you can tell by the sound of her giggle that she is nervous and doesn’t know what to do.  Crying babies are especially hard for her.  I’ve told her since babies can’t talk, they cry when they need something, but she seems to think that she doesn’t talk much, but she doesn’t cry to get what she wants.

If Casey doesn’t feel well, Rob likes to check on her.  When she’s asleep, he pulls the blanket off her head and peeks on her to see if she’s okay.   She might peek in his room if he is sick, but she wisely stays away so she won’t get sick, too.  She asks me about him – if he is throwing up, if his belly hurts, if he is hungry.  So I know she worries, too.

On the rare occasions that Casey as a meltdown, Rob checks on me.  He seems to think I need protecting while I am talking to her and he is sympathetic to my stress.  However, never doubt that he is a typical brother, too – when she starts to get calm, he likes to get close to her, point his finger and say “Casey, no fits!” which, of course, makes her furious.  He laughs when she gets mad at him.  Proof again that people with autism feel the same emotions that everyone else does – just in different ways, sometimes.

While Rob is more empathetic to Casey, last week, I saw proof that she watches over him, too.  They took a trip to a fire station and for some reason, Rob become anxious.  He began to sing his stressed song – loudly – and pacing.  Their staff tried taking him outside to walk around, but he couldn’t calm down.  And then Casey stepped in.  As the picture shows, she went to him and let him hold her so he would feel better.  I was ready to cry when I got the picture.  I know she loves her little brother, but to actually see her acting like a loving, big sister is a moment I will never forget.

She shrugged it off when she got home.  She told me she saw a fire truck and she got a hat.  I told her how proud I was that she helped Rob – she asked for supper.  A typical conversation in our house – but I know that she heard and understood me.  She just cares more about supper than whether I’m proud of her.  Whether she acknowledges my praise or not, I keep telling her how proud I am.  I know she hears me and understands – she just has other things that are more important to her.  🙂

Your child may not pay much attention to how other people feel right now, but don’t assume they don’t know those feelings.  Maybe they are like Casey and their own personal needs are just more important than what others think or feel.  You also have to remember that Casey wasn’t always this empathetic.  She has grown and matured so much over the last few years.

Never, ever think that how your child is doing right now is the way your life will always be.  One thing I’ve learned about autism over the last 30 years is that changes always happen – sometimes so fast it makes your head spin and other times, it takes months and months of hard work for all of you before you see any changes.  And sometimes, people who don’t see your child often are the ones who notice the smallest changes.  Celebrate every success, no matter how small it may seem.  Those little steps add up to a long trail of successes that you will want to look back on with pride!

 

Why do We Judge Other Autism Parents?

Why do we Judge Other Autism Parents?

I follow several Facebook pages of parents with kids with autism.  Some are just starting their journey and some have an adult child, like me.  The other day, I read a post by one of the mom’s that really got to me.

She was venting because another autism mom attacked her for being happy that the spring break was over and her son was back in school.  She was amazed that anyone, especially someone who has a child with autism, could be upset with her because she was happy to be back in their routine.

The other mom said the break was “only” two weeks – what kind of parent can’t handle being around their child for only two weeks?  She went so far as to say the mom should be ashamed of herself for wanting to be away from her child.

I posted a reaction – anger.  My response was simple – every parent, regardless of whether their child has special needs or not, is ready to get back in the routine after a long break.  Any parent who says they  never need a break from their kids is lying – to themselves or you.  We all need a break – from the kids, from our spouse, from our jobs.  Autism just makes it that much harder.

And, even more important, that mom had no idea what the other home was like.  She might be lucky enough to have an “easy” (is there such a thing??) child with autism, but none of us know what others’ lives are like.  As much as I share with my autism mom friends, they don’t know what it’s like in my house, day after day.  They can imagine, just like everyone else.   And, while I may have a good idea of what their lives are like, I really don’t.

I can picture what it’s like having a child who is blind with autism.  I can try to imagine what it’s like to live with a child who may become violent.  I can try to imagine conversations with a high-functioning teenager.  They can try to picture my life with two moderately affected young adults.  It just doesn’t work.

So why do parents judge each other?  We are all in this together.  What good does it do anyone to toss negative comments around?  We all have to deal with enough negativity with the rest of the world.  We need to let go of the whole judging thing.

I’ll admit – I’ve thought before that someone is handling a situation in a way I wouldn’t.  I can say I would “never” do something – but I’m not in that home.  There is no way I could possibly know what those parents go through every day.  Have I thought people were crazy to do things they do?  Sure – as I’m sure people have thought the same about me.  I’m ok with that – some days, I’m sure I’m crazy.

You wouldn’t tell a typical parent how to raise their child.  Why would you try to tell a special needs parent what they are doing wrong?  Why would you attack someone for voicing their feelings?  Sure, you can say you would feel differently, but don’t make anyone feel bad because they don’t do things your way.

It’s impossible for anyone to know the journey we’ve walked.  Even the people who were right there with  me, but didn’t live in the house, can’t always know it all.  I’ve always been open to hearing the ideas that other people have, but I don’t think I should be made to feel bad if I don’t follow all of their advice.  I know Casey and Rob better than anyone (except Mandy!) and I’ll always do what I think is right for them.  It may not be what other parents would do, but so what?  Other parents are not my responsibility.  It really is that simple.

I feel so bad for parents who are truly doing the best they can that are getting ridiculed or judged by other parents.  News flash – none of us are perfect – we are all stumbling through this journey as best we can, just like every other parent in the world.  Instead of offering judgment, why not offer an ear?  a hug?

My rant is over.  I just hate to hear about parents getting attacked for sharing their feelings.  If we can’t share online, somewhat anonymously, then how can we share with our friends? I want my friends to know that even if I don’t feel the same as they do, I’ll always be here to listen.  I won’t have the answers they need, but I can offer a hug or a shoulder to lean on.

Autism and the Unpredictable Speed of Change

Autism and the Unpredictable Speed of Change

When you live in a house with autism, you become adapt at keeping things the same – the same foods, the same schedule, the same clothes.  That’s why Rob’s changes in the last few weeks have pleasantly shocked me – and made me wonder “WHY?”

Rob doesn’t like new foods, new clothes or new places.  New people make him nervous until he gets a reading on them (Both Casey and Rob sense the true person inside – if they don’t like/trust someone, I watch that person closely!)  But, last week, he put a new shirt – all by himself.  Now, yes, it was the same brand that he loves, but that has never mattered before.  Even a new shirt that was exactly like an old one was something to avoid.

He used a hammer to hang up signs in his room instead of telling me to do it.  He made pancakes.

He ate canned fruit a few weeks ago.  Not because I asked him to try, but because he saw it in the refrigerator and asked for it.  (apparently, it has to be canned pineapple, not the little snack packs, because he refused to eat those – but, hey!  He tried!)   He also tried a blackberry (and it flew across the room when he spit it out!)  I can put different things in his lunchbox.

He has been coming home and not running for his iPad immediately.  He has been playing with his Legos, lincoln logs, trains, and magnetic blocks again.  He does still get excited about ripping up magazines and cardboard, but isn’t actively searching for it.  He lays on his bed and just chills out.

The staff at their workshop said he has been joining in activities more at the shop.  I heard stories about his laughter and how silly he can be.  A few weeks ago, a strap on his sensory swing broke and he fell (not far – thank God he was just sitting in it and not swinging widely!).  I was so worried about him not having his swing.  When it was installed, it was to help him with the out of control anxiety he was dealing with every day.  I also worried that even if it was fixed, he would never use it again – he tends to remember when painful things happen and can’t understand that just because it happened once, it may not happen again.

So I filled out the paperwork and the part was ordered.

And now, he acts like he doesn’t need or want it.   HUH??

Last week, he went to play Bingo at a nursing home.  (WHAT?)  A staff member asked anyone who wanted to go to get their coat and he did.  While we have played Bingo at home, he loses interest quickly.  He even played while there!  A new activity in a new place?  The autism mom in me was suspicious.  What’s going on?

The moon isn’t full.  The weather is as crazy as it’s been for weeks.  His meds haven’t changed.  The people around him are the same.  Our schedule is the same.  I wracked my brain trying to figure out why he was so willing to do new things.

After Bingo, he went to aquatic therapy, which he loves.  On his way home, he stopped a staff member to show her his swimming bag.  It has Mighty Morphin Power Rangers (the first ones) on it and he named them all for her.  He started a conversation!  Rob talked first!  Can I be any happier??

The next day, he went to a care center to do crafts with residents.  He talked more about the power rangers.  He sat and did as he was supposed to.   And as happy as I am, I want to know why?  What changed and what can I do to keep him excited to try new things?

He went to play basketball. He went to a gym and walked.  He came home and got sick later that night and even that was different.  He’s always been too scared and upset to be alone when he is sick.  This night, he took care of everything on his own.  I didn’t even know he was sick.  I did stay up with him, as he never went to sleep that night (or until early evening the next day, even though he was feeling much better).

His schedule changed Friday evening and he didn’t care.  He played with his blocks and went to bed.  The weather changed quickly last night and he hasn’t seemed to notice.

I am over the moon happy for all the positive changes.  I am so proud of him for trying things that truly stress him beyond anything I can imagine.  But, I still want to know why?  Has he just matured?  Was he spending too much time in the swing at the workshop?  But how can you tell, cause it wasn’t that long ago that he couldn’t get through his day without that soothing him.

Something like this happened to Casey several years ago.  She wasn’t always the social butterfly she is now.  She much preferred staying away from stores and restaurants and to only go to familiar places.  After she graduated and moved to the workshop every day, she began to open up to the idea of trying new places.  Now, it’s a struggle to make her understand that money doesn’t grow on trees (or in my purse – she thinks it just magically appears there) and she has to pick and choose what she does.  For the most part, she is doing awesome with that.

Maybe that’s all that’s happened with Rob.  He matured enough to handle stress and the idea of new places and people.  I hope that’s all it is.  I worry that someone was bothering him and that person is no longer near him.  I worry that he hasn’t felt well and I didn’t know it.  Don’t you love autism mom guilt?  I just need to let it go and enjoy the changes in him!

I’m excited about all the changes and I’m loving every minute of it!  I hope it continues and that he might learn to enjoy new things – or at least to try them with proper supports.  Both of them are going to a planetarium tomorrow – neither even know what it is (Casey thinks she is going to a star!) but he’s willing to try.  I can’t wait to hear how it goes!

I hope reading about the changes in Rob helps you remember that our kids are constantly changing and growing and maturing.  Your child may not like new things now, but maybe that will change.  They are learning more every day – even if we don’t see immediate results in the hard work we do with them.  Keep the faith – and keep trying, even when you don’t think it’s doing any good.  It is – I promise you!

 

Autism and the Scary, Terrifying, Try not to Think about Future

Autism and the Scary, Terrifying Future

I read a post a few days ago from a mom who was worried about her son’s future. He was still a child, but she jokingly said that she had decided she could never die because who would take care of her son? Any parent of a child with special needs has had that same thought. I know I have – maybe not the never dying part, but definitely about the kids after I’m gone.

When they were diagnosed with autism, I didn’t think much about the future. My future was how to calm Casey down or what to make for supper that Rob would eat. I didn’t think too far in advance, because the here and now was almost more than I could handle. Now that life has settled (as much as it ever will, I think!) I think about the future more.

The thing is, I don’t think much about the kids’ care. I know Mandy and Cory will keep watch over them. I wish it wouldn’t be that way, as I worry that Mandy and Cory will let autism take over their lives and I never want that to happen. I know that even if Casey and Rob live in a residential home, they will visit them and keep a close eye on their care. Mandy denies letting them live away from family, but that’s a decision for the future, not now.

No, my biggest worry is that the kids will think I just left them. Casey talks about people dying and going to heaven, but I don’t know if she truly understands that Grandpa had no choice. I worry that she thinks heaven is like a vacation and sooner or later, everyone comes back. She will say heaven is forever, but I have no idea if she knows how long forever is.

Rob will say the names of people who have passed away, but he never says much else. I don’t know if he understands heaven or just thinks they have left. It makes me sick to think he might think I just left him. He worries so much about what people think about him – what if he thinks I just decided I didn’t want to be here and left? How can anyone explain to him that I didn’t have a choice – that it was my time?

Those are the thoughts that creep into my head at weird times. Usually when I’m tired and worried about everything else (you know how it is – you can never just worry about one thing at a time!) and can’t think straight about anything. I wonder if I’m doing enough to prepare them for their future, but I’m not sure what else I can do. I have heard parents move their child into a new home in preparation of being apart. I can see the wisdom in that – the adult will have a chance to handle all of the changes while they still have mom and dad for support, but what about when the parents pass away? Does the adult with autism just think they are at home and not coming?

That’s my biggest fear. That they will feel abandoned by the person who has always been there for them – taking care of them, helping them, loving them. I know Mandy will be there for them, but I still worry about that.

I do worry about their care and it scares me to death to think about someone abusing them or hurting them because I wasn’t there. Of course, I think about that now – every single time they are out of my sight. Just like every other parent in the world. I just worry more that they will always know I love them, even when they can’t see me.

I also know that there is little I can do to stop the worry. I don’t think about it often – certainly not every day, maybe not every week. It just hits me at times and shakes me to my very core.

So here’s my advice to you. Prepare what you can – write a will, set up a trust, buy life insurance – whatever you feel will help your child the most. Think about a guardian for your young child. Think about where your adult child might live. And then forget about it. If you spend every day worrying about a future that you can’t possibly know, you will miss the joy of today.

And that would be the saddest thing of all – if your child didn’t have a ton of happy memories of you! Toss off the worries and have some fun. Tomorrow will take care of itself.