Tag: parenting autism

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Autism and a Mom’s Fear of No Fear

Autism and a Moms Fear of no Fear

A few weeks ago, I was reminded again that even though Rob has learned to fear a few things, he still doesn’t have a clue about how dangerous some situations can be.  Just another fun aspect of autism we deal with every day.

Rob was walking with a group from their workshop and never bothered to stop at a corner to look both ways before he stepped off the curb.  Luckily, the staff was quick and there were no cars coming.  But still, I have been trying to teach both of them to look both ways before crossing a street since they were tiny and it just won’t sink in.

Casey will flip her head like she’s looking, but she’s just doing what she thinks I want.  She isn’t really looking at all.  And she’s stepping into the street as she “looks.”  Rob won’t even hesitate to walk across a parking lot or a street.  He doesn’t even pretend to be looking.  I’ve got a grip on both of them or they are close enough to grab when we walk anywhere.

Part of the reason they aren’t scared is that even though I tell them a car might hit them, it’s never happened.  They have nothing to help them understand that they could get hurt and very badly.  I think the only way for either of them to understand the danger would be for one (God forbid!) to get hit by a car.  Even then, I’m doubtful the other one would be more careful.  It’s not something they have ever seen happen, so obviously, it’s never happened to anyone.

They both understand a stop sign.  They just don’t know why it’s there.  I’ve tried saying “Look, I’m stopping at a stop sign” when I’m driving, but they don’t even look up.  When we walk, I say “Look – a stop sign.  What do we do?”  One of them will say “stop” as they walk right past the sign.

I don’t want to even think about the times I walked through parking lots when Rob was a baby.  I would be carrying Rob, with a death grip on Casey and praying that Mandy would hold Casey’s other hand (Mandy is 18 months older than Rob – hardly more than a baby herself when I was trying to get us safely to the car).  I carried Rob longer than he needed, simply because he and Casey would both dart away and it was easier to carry him.  Thank God, we never had a major issue (just a minor one with Mandy when she was older!)

When Casey was 7 or 8, we were all outside playing.  Suddenly, I realized she wasn’t in the backyard anymore.  I thought I would throw up as I ran to the front of the house and the street.  No sign of her – I ran around the house again, calling her name and wondering who to call first to help me find her.  As I was making another circle, I heard her giggle and looked up to see her legs hanging off the porch roof.  She had climbed the wrought iron corner posts and was just sitting there.  I still don’t know how she managed to climb over the edge without falling.

I stood there looking up at her while she laughed and kicked and wondered if I could get her down without both of us falling.  I was heading in to call the fire department (my dad was a captain) and ask for help when I had an idea.  I asked Casey if she wanted a popsicle – and she flipped onto her belly, stuck her feet on the posts and came down.  I couldn’t breathe until her feet were safely on the porch.  “Red!” she said and went inside.

She also jumped off my dad’s boat more than once.  She walked out into water until she had to tip her head back to be able to breathe and keep going (one of us was always thisclose to her – and she always had a life jacket one!)  She grabbed at knives and jumped off the top of their swing set.  She was crazy on the trampoline.  She ran when she had the chance in stores or at school.

Rob was even more of a dare-devil than she was.  He jumped off the roof into a pile of shingles, did a somersault and took off running.  He jumped into pools with no thought of whether he could touch or not.  He climbed scaffolding (yep – I lost him on it once – thank God I heard him giggle as he watched us run around the house looking for him!)  He tried walking down our basement steps with a blanket on his head and fell – earned him a helicopter ride to the nearest children’s hospital when he wouldn’t wake up the next morning.

He jumped down the other steps and broke his collarbone.  He fell and cut his head open – stitches.  We no sooner had a hospital bill paid off than he did something else.

Neither of them understand the danger of strangers.  They have been told more times than I can count to never leave with someone they don’t know, but I worry that if the stranger offered them the right things, they might go.  They know to find a policeman or fireman if they need help and they both know their names and addresses, but would they really look for help?  I doubt it.  Having them disappear terrifies me.

Even though they have both learned to fear some things, I still worry when we go somewhere different.  I’m more relaxed, but still know that any second, one could dart away.  Rob has a healthy fear of deep water now (he jumped into a pool with a friend who is much taller than him and couldn’t touch – scared him beyond words)  Casey is afraid of heights (she insists on riding the Ferris wheel every year at the fair, but it scares her to death when she is at the top!)

I am so thankful they are both learning to be more careful.  I know that they will probably always be somewhat fearless compared to others, but at least they aren’t jumping off the roof anymore!  And I know how lucky I am that neither of them ever tried to get out of the house.  I know several families with more locks on their doors and windows than a vault and still need alarms.

What I really want is to watch them every second of the day, but I know that’s impossible and not healthy for any of us.  They are adults and need some space from me – and I need a break from them.  But still, I think about it – the world is such a scary place – especially when you don’t understand those dangers.

My plan for the future is simple – lots of hair coloring to hide the gray hairs that pop out every time they run across the street without looking or when Rob swings so high or when Casey wants to look at coloring books in a store by herself.  And lots of deep breaths to keep from panicking at their little “thrills.”

Be safe, everyone!

 

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Autism – Never Give Up, Even When you are Exhausted!

Autism - Never Give Up!

Today, I saw more proof that no one should ever give up hope when their child has autism.  While I would never say that every child with autism will progress in the same way, there are always improvements – sometimes, so tiny that you can barely see them, but they do happen.  And maybe they won’t happen in the time frame you want, but things can change quickly.

Casey wanted to go to the Memorial day parade in our town this morning.  I was going to cover it for our local paper, so it was no big deal to go.  Rob said “no fanks” when I asked if he wanted to go.  He went last year and watched it, but I can’t say he really enjoyed it.  Besides, it was hot today!  So he went to Grandma and Grandpa’s house and Casey came with me.

As soon as we sat our chairs down, she started giggling and rocking.  She was so excited!  It made me remember her as a little girl and how impossible parades were.  Mandy always wanted to go and Rob would sit beside her and watch, but Casey wouldn’t sit.  And if I tried to hold her on  my lap, she yelled and screamed.  I couldn’t trust her to sit by herself at all because she would dart away – into the street or to grab someone’s drink/food.  We didn’t go to many parades.

When the parade got to us today, I stood up to take pictures.  As the American flag made its way to us, I turned to tell her to stand up – and she already was!  With her hand over her heart!  I looked around to see who she might be mimicking, but there wasn’t anyone with their hand over their heart.  I couldn’t help it – I got choked up.  She remembered the many times I told her to stand for the flag!

We settled down to watch the rest of the parade and she laughed her way through it.  Even when candy was thrown from vehicles, she never made an effort to get up and get it.  When the parade was over, we walked to the Court Square for the ceremony.  Here was where I was concerned.  I knew she would probably sit for a little while, but how quietly, I didn’t know.  She might add her own sound effects to the ceremony.  Or everyone would hear her announce she had to go potty or she was hungry.

Instead, when the announcer asked people to stand for the invocation, she was on her feet, her hands clasped under her chin and her head bowed.  (I had no idea she even knew what invocation meant – we always say pray.)  When the prayer was over, she loudly said amen and grinned at me.  When the National Anthem started, she spun around to look at the flag (still standing) and started singing loudly.  She and I were among the few to be singing – and the others I heard all had disabilities, too.  (Why don’t people sing the anthem??)  When the Pledge of Allegiance was said, she stood and proudly recited it, too.

I was crying.  This amazing young woman was proudly honoring her country!  She remembered what to do and never had to be reminded.  Even later, when Taps was played, she stood and listened quietly.  She stood when she felt it was the right thing to do – she didn’t look around and see what others were doing.  All I could do was hug her and tell her how proud I was.  (She, of course, looked at me like I was crazy – she had no idea why her actions made me proud.)

This is the same little girl who used to fight about going into stores – the assault on her senses was too great.  She screamed when I left the room because she didn’t know if I had disappeared.  She beat her head on cement walls and put her head through two windows.  She ran from me – she ran from teachers.  She screamed when things changed her routine.  When in to the middle of a meltdown, she grabbed my hands to try and make me hit her head.  (sensory issues – she desperately need deep pressure – it took me years to figure that one out!)

I am not telling you any of that so you feel sorry for her.  I’m telling you so you can see that every child, no  matter what behaviors they have, can improve!  You have to keep your faith and hope, even when you spend your days crying from exhaustion and going on 2-3 hours of sleep a night.  Trust me – I know exactly how you feel!  Please, please – never give up on your child.  Dark days do go away (and yes, sometimes, they come back – but they always leave again!)

Casey’s changes didn’t occur in my time frame (otherwise, she would have been having days like today when she was 8!) but it did happen.  She grew up – I learned how to help her.  Keep working with your child – keep fighting for services – keep your faith!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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!

 

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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.

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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!

 

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Autism and a Happy Easter to All!

Autism and Happy Easter to All

Hold on to your hats – tonight is the full moon and the Easter Bunny is coming!  And I can tell it in my house.  Rob is singing his storm/I’m stressed song and Casey is wound for sound.   She can’t stop talking about the plans for tomorrow – Easter Bunny is coming?  Baskets?  Hide the eggs?  Grandma’s for lunch?  Grandma’s for supper?   Yes. Yes. Yes. Yes. Yes.  It’s the same every year, Casey.

We did have to change on of our traditions this year.  I was a little concerned about it.  We have always colored eggs on Good Friday, as the kids were off school and work and I was always off work.  It worked out great – gave us something special to do on a special day.  This year, their workshop was open yesterday.  Casey was stressed all month about when we would color eggs.

I told her we could do it when they got home from work, before they went to visit their dad or we could do it Saturday afternoon.  After much thinking and discussing (changing schedules are never easy, you know!) she decided that Saturday afternoon would be the best choice.  Rob didn’t care, which is funny, because of the two of them, he’s the one who really enjoys coloring the eggs.  Casey wants to because we always have.  (I wonder sometimes if this will go the way of carving pumpkins at some point – she just wont care.  I hope not.  I like our traditions!)

As soon as she stepping in the door today, she was grinning and asking about coloring eggs.  I had them ready – all I needed to do was get the dye mixed up.  (For anyone who hasn’t done theirs yet, apple cider vinegar doesn’t work as well!)   She dropped her eggs in the cups and took them out quickly and was done.  Rob carefully wrote his name on all of his eggs and slowly dropped them into the colors.

Of course, he had to name each color a Power Ranger – Blue was Billy, Pink was Kimberly, Green was Adam, Yellow was Trini….  and orange was a pumpkin.  He does this whenever he sees colors together (You should have heard him in the dollar store a few weeks ago when he saw the party supply aisle was full of every color of power ranger – and he wanted to buy a pack of napkins for every ranger.  Everyone in  the store heard him say the Rangers’ names, I’m sure.)

Rob studied the eggs in the cups of dye and slowly swirled his eggs around until they had reached the perfect color.  I wish so badly that I could see what he sees when he studies colors like that.  To me, they looked pretty much the same in the cups, but when they dried I could see slight patterns.  I know he sees those patterns in everything.  I wish I could – maybe I would be able to draw like he does!  His vision is so hypersensitive that he sees patterns in everything.  This is also why he doesn’t like to stare into someone eyes.  Did you ever notice that your eyes are always moving?  Stare into someone’s eyes sometime – maybe you will catch the slight movements that drive Rob crazy.

Casey smells the dye and the eggs.  When I asked what the eggs smelled like (I meant does anything else smell like them) she said “Eggs.”  Duh, mom – what’s wrong with you?  I knew as soon as I said it that I didn’t ask what I meant, but she answered my question with a look that clearly showed what she thought of dumb questions.  (So you know – the dye smells like colored eggs. I don’t think she knew what to call the vinegar.)

Now, she is resting and he is trying to.  The wind is picking up again.  Rob is laying under 10-11 blankets and a sleeping bag to try to relax.  He isn’t yelling right now, so the weight must be helping.  I hope the wind dies down before he wants to do to sleep tonight.  It used to be that Casey would be up all night waiting for the Easter Bunny, but not so much anymore.  She has finally seemed to realize that her basket will be waiting for her.

I love that I still get to make Easter baskets for the kids.  I love that, thanks to autism, I can keep the magic of holidays alive in our house.  I really don’t think Rob believes in Santa or the Easter Bunny like Casey does.  She believes because they obviously visit our house and leave gifts and baskets.  Rob believes because he doesn’t want to disappoint Casey.  He knows she believes and he won’t say anything that might ruin that for her.

Empathy – something people with autism are not supposed to feel.  They are supposed to be so self-centered that they can’t understand other people’s feelings.  Whoever wrote that didn’t study people with autism long enough.  Sure, it may be hard for some, but it’s hard for some “typical” people, too, to think about others’ feelings.

I hope that whatever traditions you may have you all have a very Happy Easter, surrounded by people you love and lots of laughter!  And maybe a chocolate bunny or two, just for you.  Go ahead – hide your favorite candy.  You never know when you might need a pick me up!

Happy Autism Awareness Month, too!

 

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30 Years of Autism and Counting – It Does Get Easier!

30 Years of Autism and Counting

My sweet Casey turned 30 last week.  I can’t believe it – but I really can’t believe that we’ve been living with autism for so long and haven’t gone completely insane.

Had anyone known more about autism way back then, she would have been diagnosed at a much younger age.  It’s sad, really.  I can watch the video from her first birthday party and see her completely ignore everyone.  I can hear guests saying how happy she is in her own little world and that she didn’t need any of us.  We might have realized she had autism if more information had been available.

Casey didn’t talk very much.  She could say her ABC’s at 14 months and counted beyond 30 soon after.   She could tell you what shapes were (even obscure ones that I didn’t teach her) and she could do puzzles upside down (meaning the picture was face down – she could still easily fit pieces into the frame.)  She loved colors and named every color in the box. She sang whole songs after hearing them once or twice.  But she couldn’t say she wanted a drink.

To be honest, I wasn’t too worried.  She was my first and the only grandchild on either side of the family, so she spent all of her time with adults.  She never had a chance to mimic other kids – and I didn’t have the chance to see that she wasn’t gaining skills like she should.  She was 3 when it was recommended that we get her tested and start speech therapy.  The doctor’s only concern was her speech, as she wasn’t showing any other signs of autism.  (she was, but I didn’t realize it so I never mentioned it to her doctor).

We took her to a children’s hospital about an hour from our home for testing when she was 3, but for some reason, we never got results from them.  By then, she had started a preschool that clearly was not a match for her and we enrolled her into the preschool our school district offered.  It had special needs and typical kids.  She still had a difficult time, but she had amazing teachers who knew a little about autism and they tried everything they could think of to help her.

She was 4 when she was officially diagnosed.  I read scary books and learned what little there was to learn at the time.  I think that is one of the biggest differences in then and now.  Today – there is information everywhere about autism!  Doctors know what it is and they know the signs to watch for.  There are therapists who are trained to help children with autism.  Schools prepare teachers (sometimes, they have to be told to do so, but IDEA makes sure they don’t argue too much – usually!)  I was also told that the chances of autism were 1 in 10,000.

The latest data I’ve heard is that it’s now 1 in 68 children.  That’s scary to me!  I get asked all the time if I think there is more autism and what is causing it.  I don’t know the answer to either.  I think there are many things causing it – that’s why doctors can’t pin it down.  Maybe it’s allergies to casein or gluten in some people.  Maybe it’s genetics in some cases.  Maybe it’s stomach issues.  Maybe it’s environmental.  I don’t know.  I don’t think about it much as it doesn’t matter to me.

Is there more?  I don’t know that, either.  Sometimes, I think the higher numbers are because doctors know what to look for and are finding even the mildest cases.  Those same mild cases might have just been called eccentric a few years ago.  Again, it doesn’t matter to me.  Should it?  Probably, but I have my hands full right now.  I’m always thinking and planning for the kids – I have little time to think about the why anymore.

The kids have changed so much over the years.  If you would have told me when Casey was 8, 9, 10 years old that she would be going places with friends and volunteering at local organizations, I would have laughed in your face.  At that time, she was spending hours screaming and beating her head into the walls.  She didn’t sleep through the night and if her schedule changed, hell came to our house.

Rob never slept.  He was constantly looking for things to jump off of or into.  He had no sense of danger and darted away from me more times than I care to remember.  He was picky about what he would eat and he saw no reason to talk.  He didn’t have the meltdowns that Casey did and he’s still much more mellow than she is.

Today, he sleeps through the night almost all the time.  He is beginning to try new foods and is willing to go new places, for short periods of time.  She sleeps and loves to go anywhere she can.  She wants new experiences and doesn’t hide from strangers anymore.

Some things haven’t changed, though.  I still have to help with their baths and showers.  I have to monitor their food intake and keep a constant eye on them when we go anywhere.  Neither darts off anymore, but that’s a hard habit to break – and I’m always worried that a stranger might lure them away.  I still worry about their future and I still have to plan most things down to the last details.  And I get tired.  And frustrated at times.  Sometimes, a good cry is the best medicine.

It’s hard to believe autism has been a factor in my life for 30 years.  It’s hard to imagine a life without it.  But, really and truly, I wouldn’t change my life.  God gave me three amazing kids with their own special talents.  Autism made me stronger than I ever dreamed I could be.  It also gave me a reason to use the nasty temper God gave me, too.  (Once I’m pushed too far – watch out!)  I’ve met close friends that I would never have known without autism.

I know you have tough days.  I know you have days that crying is the only thing that helps.  But, I also know that you will have good days, too, sooner or later.  Maybe your good days won’t look like mine and that’s okay.  We all need to take the good we see whenever we see it and enjoy every minute we can!

So – Happy Birthday, Casey-pie!  Here’s to another 30 years of living and laughing with autism!

 

 

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Autism and the Problem with Public Restrooms

Autism and Public Restrooms

Anyone who has a special needs family member probably already knows what this post is going to be about.  It’s an issue we all have to deal with and one that isn’t going to go away anytime soon, most likely.  When my kids were little, it never occurred to be that going to the bathroom was going to be a problem.  Then they grew up.

Rob is claustrophobic and has super sensitive hearing so even when he was little, going to the bathroom anywhere but home or grandma’s house was an issue.  The noise of toilets flushing and electric hand dryers, not to mention the voices that bounced around the small tiled rooms, were enough to convince him to not use the restroom in public – or in school, if he could avoid it.

Casey didn’t have the same problems he did.  She hated the noise, but kept a finger in her most sensitive ear until she could get out of the restroom.  Now that they are both older, the real problem for us is finding a family restroom.

I refuse to let Rob go into a men’s room when there are several stalls.  Not that I would hesitate to barge into a men’s room if I thought he was in trouble, but it’s really not at the top of my list of things I want to do.  I have no idea what kind of person might be in the restroom – and no idea what Rob would do if someone grabbed him.  I would like to think he would beat the crap out of the stranger, but in reality know that Rob wouldn’t do that.

If the men’s room happens to be just the one stall, I let Rob go in, while I stand by the door, holding it open an inch or so, just so I can be sure he doesn’t accidentally lock himself in.  I can hear when he is finished and we go on our way.  Casey can use the restroom on her own and would never dream of going into a men’s room. (Which brings up another pet peeve of mine!  Why do so many restaurants insist on labeling the rooms cutesy names to go with the theme- like hens and roosters?  I worked years to get my kids to understand men and women!)

So – our problem?   Few women give it a thought when they enter a restroom to find a mom and a cute little boy.  When they enter and find a 5’10” 250 pound young man, however, they are not so forgiving.  I don’t blame them, but I do wish they would try to understand before they pass quick and negative judgement.  Do they really think he wants to be in there?  He has no interest in seeing anything – he wants to wash his hands and get out of that noisy place!  Unfortunately, we run into nasty people who can’t seem to keep their comments to themselves.  Trust me, Rob hears everything they are whispering and it hurts his feelings.  I get mad.

We were at their neurologists office a few years ago.  It’s a two hour drive from our house so by the time we get there, everyone needs to use the restroom.  The doctor’s office is in a medical building, so there are people with special needs everywhere.  Rob was still in a stall when a lady walked in.  She smiled at me, ignored Casey and about had an accident in her pants when Rob popped out of the stall.  (Seriously – in the next few minutes I would come to wish she had, just so I could have said something nasty to her.  God forgive me.)

She let out a yell and wanted me to go get security.  I tried to explain he was with me, but she wouldn’t listen.  Her loud words were getting to him and he started rocking and humming.  The louder she got, the louder and faster he stimmed.  So now I was trying to calm him down while she was still yelling and Casey is giggling hysterically because she is nervous and scared.  By now, all I wanted was to get us out of the restroom and back to the doctor’s office.

But she insisted on making comments about my parenting skills, him being in a ladies room and how I couldn’t control either of them.  And Mama Bear came out.

I get it.  You run into a restroom and aren’t thinking about anything but the next thing on your shopping list.  And you run right into a giant young man who is humming and rocking.  He startles you.  But don’t you think there might be a reason he is in there?  Why not take a second and listen to his mom before you get upset?

When my mom and I took the kids to Virginia last year, my biggest worry about the trip was finding a restroom for Rob on the way.  Luckily, most of the rest stops along interstates have family restrooms that Rob can use.  And I made him go to the bathroom when we stopped to eat at restaurants as they often have just one stall.  But, families shouldn’t have to worry about how their children are going to use the restroom!

What if you have an adult who needs changed?  Have you ever seen an area in a store where that can be done? Unless you choose to lay them out on the bathroom floor, you have little choice.  Why can’t family restrooms be more readily available?  A restroom that is big enough for a wheelchair to get into?  I understand this costs money and we’ve come a long way with handicapped areas, but there is still room for improvement.

We need more understanding of young men or women who are in the “wrong” restroom.  Maybe I am just a paranoid mom, but I’m not taking any chances with my kids and I know most people feel the same way.  Rob goes where I go or where I know he is the only person in the restroom.  (Yep – when the door is unlocked, I peek in to be sure before I let him go in.)

OK – my rant is over.  Have any of you ever encountered issues like Rob and I do?  Honestly, most women are kind, but we have scared more than a few little girls and I don’t like doing that.  It’s the cruel and unnecessary comments that put me over the edge.

 

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More Never to be Forgotten Rules for our Autism Home

More Rules for our Autism Family

A few weeks ago, I wrote a post about the unique rules we follow in our house – often without even thinking about them.  Many people enjoyed that post and asked for more, so here we go.

  1. Casey’s feet can never be touching the kitchen floor when the lights get turned on or off.  Seriously, she flies through the room if she thinks someone will flip the switch while she is in there.  And if she is getting a drink from the refrigerator, she’ll hop out of the room if the light gets turned on.  If she has to turn it on herself, she jumps when she turns it on so her feet aren’t touching the floor.  I just asked her why she does that.  (Even though why questions are nearly impossible for her to answer – I thought I’d try!)  Her answer?  “Yes.”
  2. Casey has to hop into buildings.  Truthfully, this is much easier than it used to be!  When she was younger, she jumped through store doors onto one foot, jumped back on the other and then jumped through on both feet.  While this doesn’t sound like any big deal, when you are walking through a crowded door, people are not expecting a child to jump into them from behind or that she will jump back out the door.  I tried pulling her through the doors, but as you can imagine, that was a classic failure!  It got so bad that I either held the kids back from a store door, or sent Mandy in first to keep people back while I guarded the door so no one could get too close as she jumped back.  Thankfully, now, she just does one hop into every store and every house (including ours!).
  3. If something is written on the calendar, it will happen.  One year, Santa brought Casey a calendar that had every holiday imaginable on it – including ones from around the world and religions other than ours.  I, of course, never gave a thought to checking what was printed on the calendar.  Big mistake.  Huge mistake.  Casey decided we had to celebrate everything – Boxing Day, Kwanzaa, Cinco de Mayo, Hanukkah – you get the idea.  Every day seemed to have something on it and she was determined to celebrate them all!  Believe it or not, Santa did the same thing the next Christmas, but got smart enough to open the calendar and black out everything that we didn’t celebrate.  On a brighter not, we learned a lot about other customs that year – I tried to find something simple for each holiday so we could “celebrate” if she was going to have a meltdown over it.  Now, “Cancel” is the best word!!  She completely understands writing cancel on something means it’s not going to happen and while she isn’t always happy about it, she doesn’t get upset.
  4. Windows cannot be left open until Rob deems it’s time. He will shut doors and windows for days before he decides it’s warm enough to leave them open – or I can convince him it’s okay.  His windows are never to be open when he is home.  And he refuses to shower if the window in the bathroom is open.
  5. Casey loves cherry tomatoes and ketchup, but refuses to eat larger tomatoes because they aren’t tomatoes.  (Neither of them generalize well.  Teaching them that beagles and labs are both dogs was a challenge!)
  6. While Rob wears the same clothes all year (wind pants and sleeveless shirts – rarely, if ever, shorts), Casey dresses by the calendar month.  From October 1st – March 1st, she wears two shirts every day – a turtleneck and sweater or sweatshirt.  From March 1st – April 1st, one shirt with long or short sleeves.  May, she can wear capri pants and starting in June, she will wear shorts and t-shirts, until September when it’s time for long pants again.  Now, this sounds like a great idea, but when you live in Ohio, where you can be wearing flip flops one day and snow boots the next (did that a few weeks ago!) she can get really warm or really cold.  But – her schedule can’t be changed.  I’ve tried and then I decided she is old enough to make her own clothing decisions.
  7. Clothing is dirty as soon as it touches your body and cannot be worn again until it’s  be washed.  I mean, if she puts an outfit on and we decide to go somewhere, she will change and throw everything down the laundry chute.  If I’m quick enough (HAHA!) I’ll run down and put those clothes on the dryer so they can just be refolded and stuck in her pile of clean clothes.
  8. Rob has to have the light over the bathroom sink and the kitchen light on before he will take a shower.  The bathroom light, I understand, but no idea about the one in the kitchen.  He’s been doing it for years with no signs of stopping, so I don’t notice it.  I did make the mistake of hitting the switch one evening and turning the kitchen light off – and here comes my dripping wet boy yelling “lights on!” as he slipped and slid from the bathroom to the kitchen to get the light back on.  (Another rule of most autism homes – you never know when a naked or half-naked person may wander through!)
  9. Casey will only drink water from the bathroom sink.  Never, ever will she drink from the kitchen sink.  No idea why or even when she started doing this.  She knows I make their koolaid from the kitchen sink – she has helped me make it before.  But to get a drink, nope – no way!  If she is thirsty and someone is in the bathroom, she’ll stay thirsty instead of using the faucet in the kitchen.
  10. Holidays and birthdays are pretty special in our family.  We have traditions that we love and I truly try to make each of their birthdays as special as they are.  Casey, however, has a hard time relaxing and enjoying the whole day because she has a “schedule” in her head that must be followed.  On a birthday, you get to pick where to have supper, then family comes and you open presents, then you have cake and ice cream.  Until she blows out her candles (we finally got her to agree to a smaller number of candle than her birthday a few years ago!) and has her cake, she doesn’t smile much.  Birthdays are serious business until everything is completed – then you can relax and smile.   Holidays are the same way.  Until the schedule in her mind is complete, she is unable to truly enjoy the day.  I’ve tried explaining to her that we will do everything and she can have fun, but she just can’t stop checking items off from the list in her head.

I hope you got a few giggles from our continued list of rules!  Life is always pretty exciting around here – it keeps me young!  (or at least that’s what I tell myself!)