Month: May 2018

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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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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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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.