Tag: autism awareness

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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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Autism Moms and the Need to Just Chill Out

Autism Moms and the Need to Chill Out

As soon as Mandy sees this post, I can imagine the look on her face – she told me to do just chill out several times today.  I know I need to do that, but you know how hard it is!

She called me this morning and asked if I wanted to bring Casey and Rob to a cookout at her in-laws camp site and then take a long kayak trip.  Oh man!  I haven’t been on the river yet this year and I wanted to go so badly, but the autism mom kicked in.  Who will be there?  Do they know about autism?  What if Rob gets loud?   That was the first time she told me to chill out.  “we got it covered, mom.”

Okay, she thinks no one will be bothered by the loudness, what about taking them on an hour long trip?   We hadn’t tried that, yet – only playing by the camp site.  “I got it figured out, mom,” she said.  Her plan was to tie their kayaks or tubes to ours.  And I wanted to go so much.  I still wasn’t sure about Rob, but I could just take him home if he got anxious.  So I asked them if they wanted to go and Rob was so excited he changed into his swimming clothes right then.  (We weren’t leaving for a few hours!)  I was amazed, as he hates to wear shorts.

As I was driving, I thought about how many times I wanted to do something and really wasn’t sure about the kids so I backed out.  It’s just easier to stay at times – you all know that.  And, really, there are things that I know one or the other won’t enjoy and I either take just one or we stay home.  I did that yesterday – we were all invited to a graduation party and I knew Casey wanted to go.  I thought about taking Rob, just for a few minutes, but he said “No, fanks!” as soon as I mentioned it.  He went to Grandma and Grandpa’s house and Casey went with me.

So we get to the camper and I’m getting nervous.  Rob started singing his anxious song, but he was doing it quietly and only once.  He wanted to see the water, so we sat on a bench where he could watch the river flow by and he got quiet.  He asked for the boat once or twice, but I told him we were going to eat first and he was okay with that.  Casey just watched everything and rocked a little.

When it was time to eat, I asked Casey to wait for Mandy to get her plate and again, I got the “chill out, mom” look from Mandy.  So Casey fixed her own plate (she’s perfectly fine doing that – I was just trying to keep her out of everyone’s way – course, no one was paying attention anyway – they were fixing their own plates!)  They both ate (I was impressed – you can never be sure Rob will eat – especially when he is excited about something).

As soon as we finished, Rob started getting wiggly.  He was ready to get in the boat.  Mandy and Cory got the kayaks ready while I wondered if Rob would actually step down into it.  The water was a little higher than when we were there before and he refuses to get his shoes wet.  Casey got into hers first – squealing “help” a few times – she thought we were going to send her down the river alone.  She calmed down as soon as she saw me get into my kayak and the rope holding us together.

I got us out of the way and turned to see if Rob would get in.  And was amazed when he stepped right in and settled down with his paddle.  Soon, he and Mandy were beside Casey and I and we were off.  We had decided to take them to the end of the campground and see how they were doing.  If either was anxious, it would be easy to get out there.  They both wanted to keep going.  Rob looked half-asleep – he was so relaxed.  He even splashed his hands in the water!

Now that we are home, Casey said long trips are fun, but about halfway through the trip, I had serious doubts about her.  She kept taking big breaths and sighing.  But she never got upset.  She didn’t relax as much as he did, but she seemed okay.

I looked around at the beautiful blue sky, the green trees along the river and the kids doing something together and wondered why I ever thought about not coming.  We would have missed spending a gorgeous day outside with family and friends.  It’s just that autism mom way of thinking.  And I know we all need to just chill out and go places.

Trust me, here – I am not saying you should take your child everywhere.  You know there are places that your children won’t enjoy – just like I knew Rob wouldn’t like the graduation party.  But we owe it to our kids to try new things!  We owe it to them to show them as much of the world as we can.  It may not be easy, but life rarely is – even without autism.

My advice is to try not to be scared at the thought of trying new things with your child.  It’s not that I’m afraid of trying new things – more that I overthink what might happen and worry about ruining other people’s good times.  Like today – if Rob had gotten anxious, we would have just come home.  It wouldn’t have been a big deal as Casey could have stayed with Mandy and Cory.  But I let autism into my head and it’s hard to get out sometimes.

Autism dictates so much of our lives.  It’s a simple fact that we will never be able to change.  What we can change is our reaction to it.  Even typical people have issues sometimes, so why do we worry so much about taking our children with autism into the world?  Take whatever you think might help and go.  Stay a minute, stay an hour – whatever you and your child can handle.  Only by experiencing the world can your child want to more a part of it.  If he/she has no idea kayaking exists, how would you know if they enjoy it?  You might have a star ball player or expert piano player – but only if you let them try.

Take a deep breath, chill out and go!  It won’t always work out, but at least you tried!

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Autism Moms (and Dads!) – Follow your Gut Feelings to Help Protect your Child

Autism Mom - Follow your Gut to Keep your Child Safe

When your child is non-verbal or can’t communicate easily, one of the biggest fears of parents is that someone will mistreat or be mean to their child.  I know that feeling well – and a video I saw last week brought those fears back to the surface.   The video showed a bus driver clearly mistreating a young girl with autism who wouldn’t get off her bus.  To make matters worse, an aide was standing outside the bus waiting for the child – and she left when the driver closed the door.  Why in the world didn’t she get on that bus to help that little girl?  Autism moms, let me tell you – had that been my child, I would probably be in jail right now.

I don’t condone violence.  At one point, Casey had a teacher and a principal that were not a good match for her.  The details are deep in my heart and I’m not sure even Mandy knows what really happened.  She was just a little girl and may not have understood, anyway.   To say I was angry at the teacher is an understatement.  I wanted to smack her – to beat on her.  I wanted to do to her what she did to Casey.  I hated that woman – and came to severely dislike the principal that couldn’t see what was happening.

We were advised to sue the school district.  Even the superintendent knew we would win.  We chose instead to remove Casey from that woman (actually, the school moved her – Casey stayed in the room she was familiar with.) and not take legal action.  This was our choice for many reasons – but when I think about that woman retiring with a full pension – and the other children she may or may not have been abusive to – I am angry.  I am beyond Mama Bear angry.  But, it’s over and done and I can’t change it.

But I can be more careful about the people around my kids.  If Casey or Rob seems to not like someone, I keep a close eye on that person – and keep the kids away from him or her.  I’ve told you before how quickly they “read” people.  It’s always interesting to me to see who they don’t like and wonder what is deep inside that person that the kids can sense.

I listen to my gut feelings now.  If something seems “off” about a situation, I check into it.  If the kids suddenly don’t want to do something or go somewhere that I know they enjoy, I find out why.  Several years ago, there was an issue that concerned me and I just started dropping into where they were and checking on them.  Mandy and my parents would stop in, too.

A few years ago, Rob was involved in an incident.  The details aren’t important now, but what is important is that it shook the trust I had in people.  I understood the staff’s frustration, as I know either of my kids can act up (I’ve never been a mom who says my child would never…  I’m sure they would!)  What I was the most upset about is that I wasn’t told about it until I started asking questions.  Casey kept repeating a phrase about Rob and he was upset.  Unfortunately, by the time Casey got the words out, it had been a few days since the incident.

Rob finally was able to say a word or two and another mom contacted me because their adult child was a witness and had told her what had happened.  I confronted the issue and it was taken care of.  My gut told me the day it happened something was wrong – Rob was just off and Casey was wound for sound.  But, I didn’t follow up on it right away.  (No excuses – except maybe I was just so darn tired of autism)  My gut kept at me and I checked into things.  That situation is resolved and I’ve asked to always be told right away if something happens while the kids are at work.  (Like I said, I know things happen – I just really hate not being told what’s going on!)

Even if your child is non-verbal, you will see signs something is wrong.  Maybe they get upset about getting on the bus all of a sudden.  Maybe they won’t eat at school.  Maybe they can’t sleep at night or a new behavior emerges.  High anxiety is a possible sign of a problem somewhere.  It’s hard to know what the problem might be until you start digging.  If your child refuses to get on the bus, start with the driver – has something happened?  Was there a change in the route?  Is it too noisy?  Ask the other kids on the bus – or their parents.  If the bus has a camera, ask to watch the video.

As your child with autism grows up, you will learn to become part private detective.  It’s exhausting at times, but a necessary thing to do.  Visit the school.  Become friends with your child’s teacher.  If you have concerns, voice them.  Most teachers are wonderful, but there are always a few that aren’t.  If you don’t think your child’s teacher is a good match for your child, speak up.  Talk to the teacher – talk to the principal.  No, these are not easy conversations to have, but you have to do it!

Drop in your child’s class/school.  If you are told this isn’t possible, do it anyway.  You have the right to see your child at any time.  If a school refuses to let you visit, that’s a giant red flag – always follow up on that!  Take someone else with you and go!  (if a situation gets tense, always take someone with you  when you go – a witness might be needed)  Climb the chain of command if you need to.  Schools want only the best for their students –  if a teacher is a problem, they want to know.  (at least, good schools do!)

You know your child the best.  If you get a weird vibe that something is wrong, don’t ignore it or assume you are just being over-protective.  So what if you were wrong?  You laugh about it and move on.  But – what if you are right and you do nothing?  Your child can’t help themselves – you have to do it.  Do whatever you have to do to make sure your child is safe.  You might realize he/she is only anxious because puberty is starting or they are going to go through a growth spurt.  Or you may save them from a traumatic situation.

Trust yourself.  Trust your instinct.

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What is the Best Way to Teach Communication for People with Autism?

Best Way to Communicate for People with Autism

I’ve been asked so many times “How did you get Casey and Rob to talk?  What’s the best way to teach communication skills?”  And I have an answer – I have no idea.  I don’t know.  We got lucky.  The stars were aligned.  I don’t mean to be flippant about my answer, but I just don’t know.  I wish I did.  I would be rich!

But seriously, every single communication device has good points and bad.  And, every person with autism is different.  What worked with Casey, Rob had no interest in.  I’m still trying to figure it out.

Casey could sing entire songs as a toddler, but she had no interest in using her words to ask for what she wanted.  Even into preschool, after a year of speech therapy, she had few words that she used consistently.  Her teachers used PECS (picture exchange communication system) with her and she began to understand that she could ask for what she wanted.

They printed the PECS cards of everything that could think of that she might want and put velcro on the back of each card.  Using a long strip of cardboard with opposite velcro, they constructed sentences for her to repeat.  She could point to each picture as she said the words, such as “May I have cookie, please?”  I also started using American Sign Language with her.  I found out that she could say the word easier if she could sign it, too.

When she was 5, we had Auditory Integration Therapy done with her.  We knew her ears weren’t hearing normally and had heard good results with this therapy.  My mom and I (and Casey, 2 year old Mandy and baby Robbie!) spent two weeks in a hotel about three hours from home.  To add to the “fun” we all had pink eye.  My dad and their dad joined us over the weekend.  My best  memory of that trip is that 4 days after Casey started the therapy, she said “doughnut” at breakfast!  I hadn’t asked her what she wanted – she volunteered she wanted a doughnut.  And I cried.  We all cried.  (she did get a doughnut!)

The therapy was done in June and we continued to hear a new words throughout the summer.  She still didn’t use whole sentences, except the ones we had scripted for her.  And if she was having a meltdown, communication was non-existent.  She simply couldn’t get the words out when she was upset.  Meltdowns were common when she started school.  She had them at school often, but at first, we didn’t see them at home (probably because she didn’t have demands on her here)

Now, Casey is more likely to have a “conversation” with you – about what she wants to talk about, of course.  She won’t sit and visit with people, as she sees no reason to do that.  If she wants something, she is able to tell me what she wants.  She can share memories and answer most questions.  I try to always remember to say “Tell me what you want” instead of “what do you want?”  (I highly suggest you try that with your child – statements are much easier to process than questions).

Rob had more words than Casey as a toddler, but he was also less likely to use them.  Mandy spoke for him all of the time.  When he wanted something, he pointed to it and Mandy told me.  I asked her so many times to let Rob talk, but she was so earnest in wanting to help him, she couldn’t understand why she shouldn’t.  When she started preschool (she went to the preschool our school district offered – typical and special needs children.  It was where Casey had gone and she loved the teachers), I was amazed at how many words Rob could say.

He didn’t see any reason to talk beyond what he needed, but he had a huge vocabulary compared to Casey at that age.  (She understood everything – she just didn’t acknowledge the words)  He loved being read to and pointing out objects in books.  He was still so far behind other children his age, but at least I knew the words were there.  With Casey, I was never sure.

I used ASL with him more than I did with Casey.  It’s funny, because once in a while, she still signs please and thank you as she says them.  Rob liked to rip up the PECS cards, so ASL was the better choice for him.  I still use it with him, especially when he is getting anxious.  We use later, stop, listen, now, wait and look a lot.   He understands a long list of signs and used to use them often.  Now, he tends to just say what he needs, but once in a while, he does sign as he says his words.  If your child has any sensory issues with their ears, trying ASL may be a good choice for you.

I also suggest that when you talk to your child, make sure you give them time to process what you said and form an answer.  Rob was in elementary school when we discovered that if he was asked a question and given 30 seconds to answer, he usually would.  I was thrilled with this and still give him plenty of time when I ask him something.  (By the way – 30 seconds is an eternity when you are trying NOT to say anything and waiting for a response!  Keep waiting, anyway!)

Some people are completely against using ASL because they think it means they are giving up on their child speaking.  This can’t be farther from the truth!  You are simply giving your child another way to communicate as they learn to use their words.  And, the reality is, some people with autism will never have verbal skills, but they use other ways to communicate and the results are amazing.  Be happy with whatever way your child chooses to communicate!

Casey and Rob both have iPads with a communication app on them.  They love Proloquo2Go.   They both understand how to use the app (it’s easy – you can even add actual photos of items your child might want) but they tend to say what they want after playing with the app.  They both like to use the app to make sentences that are funny to them.  Rob especially likes to type sentences such as “The dog is purple” and just laugh and laugh.

There are so many techniques for helping your child communicate.  You know your child best and what might interest them.  They may like the picture exchange actions or a communication device might catch their attention.  You will have to try many techniques and constantly work with your child to improve their communications skills.  Notice – I didn’t say “verbal skills.”  I said communication – in whatever form that takes!

Think of the people with autism who never speak, but can type their thoughts.  Or the ones who sing.  Or who can sign.  Never give up, but adjust your dreams.  You may never “hear” your child say “I love you” but you may see in it signs, in words or, most definitely, in their eyes.

I wish I had the perfect answer for each of you.  I wish I could promise you that your child will be communicating with you soon.  What I can tell you is that you will learn how to communicate with your child.  It may not be long talks around the supper table, but you will each learn the best way to communicate.  It may be an odd assortment of techniques that work for your family.  It won’t matter how you communicate – it just matters that you do and that you accept however your child chooses.

 

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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!)

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Autism and Having Hope – It’s not Only Possible, but Necessary!

Autism and Hope

A few days ago, I posted a meme on our Facebook page about always thinking and worrying about my kids and their future.  It wasn’t meant to be anything other than a reminder to other parents (both of typical kids and special needs kids) that everyone feels the same – a near constant state of worry.

But another mom commented that sometimes, she felt pictures like these could be offensive – that if our kids see them, they may think we aren’t proud of all they have accomplished.   I felt terrible – I never meant for anyone to feel like that about something I chose to share and I told her that.  It also made me think.

When I started this blog and our Facebook page, it was a way to share our lives and spread awareness of autism.  I wanted to make people laugh about the craziness that sometimes comes with autism (and I have another list of “rules” to share soon!) along with letting other parents know that black times do end.  Maybe not as soon as we wish they did, but they do.

I wanted to let parents know that it’s ok to be tired and frustrated and to ask for help.  I have a terrible time with all of this.  I let guilt get to me that I should just let roll off my shoulders.  I’ve been an autism mom for almost 30 years – you would think it would be second nature to me to take things as they come and let little stuff go.  I try, but it isn’t easy.

One of the most important things for all families is hope.  Even when behaviors are occurring constantly and you haven’t slept in weeks, you have to have hope.  Faith and hope will move the mountains in your child’s life.  When you seem to have nothing but tears and anger, dig down deep and find that spark of hope.  Your child’s life depends on your own hope.

You are your child’s best advocate.  Teachers and doctors may have a bunch of letters behind their names, but you are the expert on your child.  YOU!  Only you know what sensory issues may be occurring.  Only you know what sets of tantrums in your child.  You know the dangers your child is unaware of.  Yes, professionals can give you advice, but they have to listen to you first.

You have to show them the hope you have for your child.  You have to share the dreams you have.  Yes, those dreams may have changed a few times, but you still have them.  Maybe your dream that your child will have a job they enjoy – whether that is working in an office or working in a sheltered workshop.

Maybe you dream that your child will be able to live on their own at some point.  Or be able to travel.  You can still dream!  Let your imagination soar and then make a plan to help your child reach that point.  I’ve had to change dreams for my kids several times, but I’ve finally found the perfect dream for all of my kids – happiness.  Yes, I know that sounds simple, but isn’t that what everyone really wants?  A happy life?

My hope is that Casey can continue to find opportunities to explore the community and volunteer.  She loves going new places and trying new things.  (New people, she can do without, but she has learned to handle that, too).  I hope that her life is full of new experiences, adventures and things that make her giggle that amazing giggle of hers.

For Rob, I dream of him always having people around him that accept him for the amazing young man he is.  I hope he can continue to find happiness in watching clouds float by, watching water flow, ripping magazines and building power poles and trees with his Legos.  I want him to always find things that make him smile.

I pray that Mandy and Cory find jobs that always feed their passion for life.  I hope they always look for the good in a person’s heart.  My dream for them is that they always  have faith – in themselves, in each other and in God.  I hope they find laughter in every day and that they share those laughs with others.

We have had black times in our family.  There were many days that I sat and cried – or just sat because I was too tired to cry.  There were screams and broken things and sleepless weeks and constant sameness.  But I always had hope – maybe just a tiny glimmer in my  heart, but it was there.  I prayed and I screamed into my pillow.  And I hugged my kids and told them I loved them more than anything.

I told them how proud I was of them.  It didn’t matter if it was because Rob tried a new food or that Casey got control before she lost her temper or Mandy had an excellent grade card.  I was proud when we made it through the grocery store or when they learned to wash their faces.  I was proud and I dreamed for more.  You have to do that, too.  Always, always dream for more.  Your dreams won’t be the same as mine – or even the same for each child.

You may feel at times that you simply cannot handle autism anymore and that’s okay.  It doesn’t mean that you don’t love your child – it means that sometimes, life is tough – for all parents!  You can be so proud of your child and frustrated at autism.  Your feelings are okay – don’t let anyone tell you different.

Hope can be a hard thing to hold on to, especially with autism.  Everyone feels hopeless at times.  The important thing is that you find that spark in you and let it grow.  Hope and faith (in yourself, in your child, in God) are so important in our lives!

Always reach for your dreams!

 

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Autism, Ear Infection and More Mom Guilt

Autism, Ear Infection and Mom Guilt

It happened again this week – another huge case of autism mom guilt.  And another day that the communication problems that autism causes has hurt one of my kids.

Ever since I was sick a few weeks ago, I’ve been watching the kids closely.  As bad as influenza is going around, I thought there was little chance that one or both of them wouldn’t get it.  But, days passed and they both seemed fine, so I started to worry less.

I was a little concerned about Rob.  He didn’t seem quite like himself, but he never said “hurt” or “Let me see” so I tried not to hover over him too much.  He was eating and sleeping – but his eyes looked funny.  I just had a gut feeling something was up, but he still wouldn’t say anything.

So, I waited.  He went to camp and had a great time.  He came home from the workshop on Monday and said “hurt” and pointed to his ear.  Ok – now we are getting somewhere.  I asked if he needed to see Dr. Myers, but he said “no fanks” and ran back to his room.  If his ear was hurting, it didn’t seem to be bothering him too much.

He didn’t mention his ear again until Thursday.  By then, I knew he was in pain and that it must be bad.  Rob has an extremely high tolerance for pain, so when he finally says something hurts, it’s bad.  Of course, by the time he mentioned it, the doctor was closed for the day and we had to wait.

When he saw the doctor Friday morning, he tipped his head to him (showing him the hurt ear) and said “hurt.”  He had a slight fever and he wanted to sleep.  The doctor said the infection was so bad in that ear that the ear canal was swollen and he couldn’t see the ear drum.  I felt like someone had punched me.

The doctor was concerned his ear drum may have burst.  Rob looked so sad and I was ready to cry.  I truly do know that it’s impossible for me (or any of us) to always knows what’s going on with our non-verbal kids, but the guilt I felt was so strong.  I knew for days something was up with him – why did I wait so long to take him to the doctor?

I have all sorts of excuses.  I thought maybe he had a touch of the flu (my ears hurt terribly!).  He didn’t have a fever (or at least not one high enough I noticed) but his eyes did look off.  He didn’t want to go (when he was little, he saw doctors so often that he cried as soon as we got near an office.  It wasn’t until a few years ago that he and Casey started telling me they needed to see Dr. Myers.) so I thought I’d wait until he told me he needed to go.

None of that matters, though.  The only thing that mattered to me was he was hurting and how to help.  He got meds and ear drops.  I wondered how easily he would let me put drops in the sore ear, but he must have understood when the doctor said they would help because he tilts his head as soon as I mention the drops and he keeps his head tilted for a few minutes to let them get into his ear.

He is taking his medicine without issue.  It’s only been a few days, but I was hoping for more improvement than I’ve seen.  He is talking a little more, but he wants to lay on his bed and not rip paper or play with his iPad.  He hasn’t said anything about his ear.

Truly, I feel like the difficulty we have in communication is the worst part of autism.  The sensory issues are tough at times, but we adapt.  The constant need for the same things in the same way gets old, but we are handling it.  But – when they can’t tell me when they are hurt, it hurts us all.

Even now, he can’t tell me if he is feeling a little better and I can’t tell.  I’m supposed to take him back to the doctor tomorrow if there isn’t any improvement, but how can I tell?  It’s just a guessing game – and this one involves his health and is important.

He has a communication program on his iPad so I tried to get him to answer me with that.  He pushes the off button and covers his head with a blanket.  The last time I went to check on him, he said “Good bye, Mommy Jen”  (translation – get out of my room and leave me alone!)  So I’ll wait and see and hope for a sign that he’s better before tomorrow morning when I have to decide about calling the doctor.

Autism and mom/dad guilt seem to go hand in hand.  I know I feel like I should be able to know everything about the kids – even as my head says that isn’t possible.  My heart argues that a mom who truly knows her kids would know when they are sick or when something is wrong.  I’m tired of the guilt.  I’m tired of trying to out-think autism.

Do me a favor and take my advice.  Do what I’m trying to do today.  Let go of the guilt – it makes you second guess everything until you don’t really know what you are seeing/feeling. Every parent makes mistakes – even the ones whose children are able to communicate.  Don’t let autism make you think that you aren’t an awesome parent, because you are!