Category: verbal difficulties

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“Do Your Kids with Autism Talk?”

Do Your Kids with Autism Talk?

Most of the time, when someone learns Casey and Rob have autism, this is one of the first questions I am asked and when I say, yes, they can talk, I am told how lucky I am. I’m not denying that I am extremely lucky, but…. talking and communicating are too vastly different things.

Right now, Rob is talking in his room. Long black train, Grandpa Bill, Christmas trees, and tomorrow’s Hopewell. Casey is laying on the couch giggling about Elmo learning his ABC’s. Yes, Casey and Rob can talk – for hours, loudly, but, they have a difficult time communicating with me.

They can answer simple questions, most of the time. “What did you eat?” “What do you want to eat?” “What store do you want to go to?” “Do you want….?” Easy, short questions that have literal answers.

But, communicating, that’s another story. I have several examples of what I mean.

Next week is Rob’s birthday. I have asked him several times what he would like for his birthday. “Presents.” I asked what kind of presents. “Presents.” He doesn’t understand that I’m asking what he wants inside the wrapping paper, even when I change the way I word my question.

Friday, when I dropped them off at Hopewell, Casey couldn’t get her door open. She was in the backseat and the child lock option was on. Rob flipped the switch and got out. She couldn’t tell me she needed help and since I was watching to be sure he walked straight around the car to the sidewalk, I had started pulling away before I noticed she was still in the car. (Mother of the Year minute, right there! 🙂 ) She simply didn’t know she could say “stop!” or “help!” Other times, she can ask for help – but it’s not a consistent habit.

Their iPads updated one night. Casey asked for help the next day. Since the iPads rarely update at the same time, I didn’t think to check his. Instead of coming to me, he just laid it on his bed and found other ways to occupy himself. (He doesn’t usually spend as much time on the iPad as she does – he has several other things he likes to do.) But, still – he didn’t know how to ask for help, even though, most of the time, he can. His headphones stopped working and again, instead of telling me, he found an older, small pair and used them.

A few years ago, we drove to a place about an hour from home to look at Christmas lights. On the way home, he started saying his anxiety phrase – loudly. Mandy and Cory were with us and even they couldn’t calm him down. When we got home, he ran to the bathroom. Since we were in the car, he didn’t know he could still say he needed to use the bathroom and we would find a place to stop.

It’s little things like these that show how much their communication skills are affected by their autism. Yes, they talk – most days until it’s just a long, loud blur in my ears. But, they don’t really communicate with me. I can’t ask them what they did during the day. I can’t ask what their favorite color is or what movie is their favorite. I can’t know for sure what gifts Rob would like. I can’t know for sure when they are feeling sad or sick or tired. My life is a series of best guesses. Most of the time, yes, I get it right. (After all, I’ve lived with them for 33 and almost 29 years! 🙂 ) But, I would so love to have a real conversation.

What do they think about having a nephew in December? Where would they like to visit? Does anyone scare them? Or bother them when they aren’t with me? (that’s a huge fear – it can take weeks for Casey to say anything and it’s like pulling teeth to get info from her. Rob won’t say anything at all.)

So, yes, I am very grateful that Casey and Rob can talk. I love that I can get some answers from them. I am one of the lucky parents and I thank God for that every day. But, please remember that the ability to talk does not mean someone can communicate their needs, wants and fears. That takes patience and years of being around someone to understand. Learn to read your child’s eyes. The eyes truly are the windows to the soul – you will see how much they love you in their eyes, when you learn to look instead of listen.

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Autism and Abstract Thinking

Autism and Abstract Thinking

Look at the picture with this post.  What is it?  A dog?  A puppy?  An animal?  A pet? Blue? (That’s her name. 😊)  Any of those guesses are right.

Have you ever noticed how many abstract thoughts you have every day?  How many generalized ideas that you don’t really think about?  Now consider your person with autism who struggles constantly with very literal thinking.  Their thoughts are often black and white – concrete ideas. 

Can you imagine being told that the four legged thing in your home is a dog, a pet, an animal and a Labrador retriever?  For us “typical” people, that’s all true, but if you think that everything has one label, it’s confusing and makes no sense.

Casey really struggled with labels when she was in elementary school.  She simply couldn’t understand that the word “animal” meant so many things.  Or that the word “dog” could be our black lab and Grandma’s furry pet.  Cows could be black or white or brown.  Trees could be maple or oak or pine.  They all looked so different, but had the same name.  She would get angry about the different labels for the same things. 

She was in junior high before she started realizing it was okay for objects or people to have different names.  Imagine her shock to discover her Mommy Jen was also Uncle Jeff’s sister (Jenny), and Grandma and Grandpa’s daughter!  I was a mommy, a daughter, a sister, an aunt, a cousin, a niece, a granddaughter, a friend.  It was too much for Casey to understand.  When she was young, she knew Mandy was her sister and Rob was her brother, but she wouldn’t call herself a sister, because that was Mandy!

Imagine you are told you are going to McDonald’s, only to discover you didn’t go where you thought!  There are thousands of McDonald’s, and they are similar, but so different.  How confused would you be?  And remember, while you are trying to understand this, people are constantly trying to get you to label items and tell them what you want!

But – how can you label something with so many names?  You are struggling to get words to come out, already, and now you don’t know what word to use.  You are thirsty.  Do you say cup? Drink? Water? Juice? Thirsty? The color of your favorite cup? Because every one of those words will get you a drink.  As an adult, if you were in this position, how frustrated would you be?

Rob seemed to grasp generalizing a little more than Casey did.  He knew dogs and cats were both animals, but he didn’t care.  He understood people had different names.  (Casey still struggles when people have the same name.  She gives them an extra name, such as “Our Tracie” and “Other Tracy.”  She doesn’t mean anything by it – it’s just her way of separating two people. 😊)

When you are trying to help your child learn words, consistently use one word for each item. Say “cup” every time, not mug or glass.  Say “shoes” not sneakers or boots or flip flops.  All of that can come after your child understands when you say shoe, he needs to put something on his foot.

We used PEC cards with Casey for a while and she learned quickly, but then I realized she thought of a drawing when she said cup and not an actual cup.  We switched to using actual pictures of items versus the print out designs and this helped so much.

I made books for Casey and Rob with pictures of people, places and common items.  They could carry their books (I had one for home and school) and could point to what they needed.

Abstract and general pictures worked a little, but the actual photos were better.  They didn’t have to wonder if the pencil drawing of a book meant the same as an actual book.  Don’t assume your person with autism can generalize like you can.  Remember how literal they think. There are no shades of grey.

Once your child can communicate her needs, you can decide to work on more generalization, if you see the need.  Honestly, I don’t push that for Casey or Rob. It’s not a life skill they need.  If they get confused, I explain and we go on.

Always remember when you are talking to a person with autism to use short, clear words and give them plenty of time to process what you said before you repeat it. Keep it simple and short and say exactly what you mean. Life will be so much easier for you and your child when you learn to do this!

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Autism and Difficulty Reading Facial Expressions

Autism and Difficulty Reading Facial Expressions

So many times, I’ve heard people express their amazement that Casey and Rob each have a sense of humor – that they are deeply aware of people and react to what happens around them.  I know it’s because for years, people with autism were believed to not feel emotion or any sense of connection with others.  It’s one if the biggest myths of autism.

What Casey and Rob really have trouble with is reading facial expressions.  Actually, I’m not sure that’s right.  Maybe they can read faces, but they read people better and, often, people may be smiling while they are mad (to hide true feelings) or crying when they are happy.  (And in my case, when I’m furious, I cry.  Ugh!)

Imagine how hard it would be to understand facial expressions if people didn’t look sad every time they felt sad.  Or when people force smiles.  If you can’t ask questions about why people do such things, how would you ever be able to understand?

When Rob gets confused about how people feel versus what he sees, he gets very anxious and will try to leave the situation.  He will rub at his cheeks and begin to rock and hum.  When Casey doesn’t understand, she giggles. 

We were in Wal-Mart several years ago and a mom in the check out beside us wasn’t being very nice to her kids.  She had a toddler who was crying.  Crying babies and children are sure to make Casey giggle. She’s not laughing at the child, but rather, she’s nervous about why the child is crying.  I tried to explain that the mom was trying to help the child and told Casey to stop staring.

Meanwhile, that… Umm… Woman…  Yelled at her kids and noticed Casey giggling.  She yelled at her and when I tried to explain she had autism, she got really nasty.  At one point, she threatened to throw a two liter bottle at Casey to shut her up.   I, in my usual grace and kindness, replied with a not so nice threat of my own.  Casey giggled louder, Rob was trying to run, and I was seeing red.

A manager actually came over and dealt with that witch and I got us out of the store.  Once we were home and calmed down, Casey asked about mad baby.  I told her the woman was just not happy and that she didn’t need to worry about seeing her again. The thing is, had Casey been able to recognize the situation easier, she wouldn’t have been giggling or caught that woman’s attention.

I have discovered that if I show Casey and Rob pictures of people showing emotions, they can both tell me happy, sad, mad, tired, scared.  But if they see that same person making the same face in person, they have a much harder time.  I can only assume that they are picking up other signals from the person that may not match their facial expressions.  It’s also confusing to them that they can make a “mad” face while they aren’t actually mad, but playing or taking selfies of themselves.  (I have several sets of each of them making faces at the phone and taking pics!  🙂 )  If you can make a mad face while you are having fun, then how do you know that the person making the mad face in the store isn’t having fun, too?

It may also be harder for them to focus on a person’s whole face and not just one part at a time.  While they will both look in your eyes, neither will look long.  Casey has told me that eye’s move and she doesn’t like it.  Rob has never said why he doesn’t like to look in anyone’s eyes for a long time.  Maybe if they are focused on whether the mouth is smiling, they can’t notice the feelings in the person’s eyes.  For many people, the mouth is the first part they focus on – is it smiling?  frowning?   But, again, if your mouth doesn’t match your emotions, how can a person know?

Imagine seeing a friend who is smiling, but tears are falling and you can’t communicate your concerns.  Would you assume the person is happy because of their smile or sad because of their tears?   Add to that the social anxiety that so many people with autism feel anyway and you may just walk away without ever figuring out how they felt.  I’m sure I would – just in case they were sad, I wouldn’t wan to upset them anymore.

The sad part is, this isn’t something you can teach your child.  Because this time, tears may be happy, but next time, they may be sad.  This time, the person may be angry, but next time, they may be teasing.  Facial expression recognition may be something your child with autism will never comprehend.  It’s not concrete – it’s constantly changing from one person to the next.  What about the person who always looks angry?  Or the one that fakes at being happy all the time?  Your child will know and it will just add to the confusion.

If your child gets anxious easily, trying to decipher facial expressions may just be too much for them and that’s okay.  Even some “typical” people are oblivious to the expressions of others.  If your child is able, you may be able to help them learn to ask if someone is happy or mad or sad.  Or you can just help them understand that it’s hard for a lot of people and they just need to be kind.

Who knows?  Seeing everyone wearing masks might make things easier for our kids.  They can focus on the emotion they see in another person’s eyes and not the conflict between the eyes and mouth.  Or they can learn to treat people as they are being treated and move on.  Some things may never be understood and that’s okay for all of us.   🙂

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Autism and Black and White Thinking – No Gray Areas

Autism and Black and White Thinking – No Gray Areas

Anyone who has spent time with a person with autism knows that their minds tend to work one way – very literal. They believe what you say – exactly as you say it. I still manage to say things that everyone around me would understand but that Casey and Rob take exactly as I say it.

Last week, when I washed the kids’ sheets, Rob put his on the bed and carefully put his pillows in his pillowcases. I asked Casey if she needed help or if hers were on her bed. “On bed.” So I asked if she was ready for bed. “Yes.” Two days later, I discover that her sheets are indeed on the bed – but mixed up in a pile of blankets, not actually on her bed. I pointed to them and asked why she didn’t put them on her bed. She looks at me like I’m crazy and says, “On bed.” Okay, true, they are on the bed. And I realized again that while I did say what I meant, I didn’t actually mean what I said.

Yesterday, Mandy and I were finally able to find time to take Casey and Rob to a state park swimming – with 5 dogs. Obviously, all of us would be a tight fit in one car so we split up. She was driving behind us. We had only been driving a few miles when I noticed that Rob was getting worked up. He was in the backseat and beginning to rock a little faster than is usual for him. I watched him a few minutes to see if he would calm down, but he only got more upset. When I finally asked him what he needed – Mandy! I had told them Mandy was going “with” us – and we left her at our house! She wasn’t in the car, too, so she wasn’t with us. He calmed down when I told him we couldn’t all fit and that Mandy was driving behind us. But he did have to keep turning around to check on her! 🙂

Or how about the time I told a much younger Casey to “hold her pants on” (meaning – wait a minute) only to turn around and see her holding onto the belt loops of her jeans, probably wondering the whole time why holding her pants would get her juice poured faster.

Or when I said Rob had a frog in his throat? Or that he was a little hoarse? It’s raining cats and dogs (that one really freaked Casey out!) Or asked Casey to get her clothes off of her chair (meaning – put them away!) – so she put them on the floor. And the list could go on for miles. And all I can do is laugh, because they do exactly as I tell them. There is no room for anything other than literal terms.

They don’t lie. If they don’t like something, they tell me. I made a chicken dip once and asked Casey if she liked it. “yes.” I asked if it was as good as Mandy’s. “No.” She saw no reason not to tell me – or any reason as to why Mandy’s is better. Never ask a person with autism anything that you don’t want the truth from. I actually like taking Casey with me to try on new outfits – she will always voice her opinion. She may not understand general questions, but I can say, “Does this shirt look pretty on Mommy?” and she will tell me. 🙂

On a side note – never ask if you are looking fat, tired, dirty or anything else negative, if you are hoping for a bump in your self-confidence. If you look it, they will tell you. And that’s on no one but you. 🙂

I would say that learning to be careful what you say is one of the hardest lessons for an autism parent. We all grow up with family sayings and we use them all the time. But people with autism have a hard time understanding that you don’t always mean exactly what you say – especially when you are constantly telling them they need to communicate so you can help them. It’s a difficult position to be in.

It’s hard to be always thinking about what you are saying and how to say it clearly for people with autism. Some days, Casey and Rob “get it” on the first try and other days, I might as well be talking to a wall. Either I’m not being clear enough or they just don’t care and see no reason to continue listening. (And, really, isn’t that an awesome gift? To just be able to not care and not worry that you are hurting someone’s feelings by not listening? 🙂 ) While I have worked with them since they were little to never be mean or rude, some things are just a part of their autism and I will never be able to change that. Honestly, I don’t want to – I want them to keep their independent thinking and their ability to shut out things they don’t want to hear.

Communication is often one of the hardest parts of living with autism. You have to learn to speak like an adult to one person with autism and be more childlike with another, but not so childlike that they feel you are talking “down” to them. I have a hard time with Casey and Rob at times. I find myself talking to them as kids instead of the adults they are. So I’ve learned to talk like an adult with a child’s enthusiasm and short, clear sentences. Neither of them like long rambling directions or stories. Short and to the point – details aren’t needed unless they ask.

Trust me – no matter how careful you are with what you say, you will get it wrong at some point. You will say “head over heels” or “pull someone’s leg” or “cost an arm and a leg” and you will completely freak out your child with autism. “It’s a piece of cake” will get a glare when there is obviously no cake. (Yep – I’ve said that a time or two. Casey is never pleased.)

So not only will you have to learn an entire new language of medical, educational and government terms (IEP, ISP, OT, PT, MFE, and on and on and on) you will have to unlearn a lifetime of things that you have said often without even thinking. (I’ve also noticed that every part of the country has it’s own sayings!) Or maybe not unlearn it – just learn to be careful when you say it. Sometimes, the results are funny, like Casey trying to pry Rob’s mouth open to see the frog. Other times, it just makes a bad situation worse.

I know I’ve had my share of laughs over my choices of words. I know I still (after 32 years of living with autism!) say things without thinking and then wonder why in the world the kids didn’t do as I asked. (Because I didn’t actually say what I meant, of course!) It makes life interesting some days and very frustrating others, but as long as we can eventually laugh about it, who cares?

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Autism and Illness – The Sound of Silence

Autism and Illness - The Sound of Silence

Let me say… I’m always ready for a few minutes of quiet – no long black train, no stomping up the stairs, no music blaring, no long repetitive sequences of words. In the last week, I’ve gotten lots of quiet moments and have been worried to death.

Last Sunday, my mom gut told me Rob wasn’t feeling right. I couldn’t pinpoint what was wrong, as he was eating and drinking like usual. No rubbing his ears. But, I knew something was going on. By late afternoon, he had a fever. By mid evening, his fever was over 103 and he still couldn’t tell me what hurt.

So I went into panic mode. I gave him ibuprofen, popsicles and cool rags for his head (which he hated and threw off as soon as I turned my back!). I talked to mom and Mandy and cancelled our plans for Monday. And I tried to decide whether to take him to the emergency room. (he had a seizure when he was little from a high fever – I’ve always been terrified it would happen again.) I paced from his room to the living room where Casey was on repeat “Robbie’s sick. Robbie’s sick. Robbie’s sick.” I took a chance and asked her if she knew what hurt Rob. Then she started coughing, but not too much.

His fever wasn’t coming down, so I put him in the shower. I was surprised he got in as I knew how bad he was feeling. I said again “Tell me what hurts.” No response. “Show me what hurts.” Nothing. Just a completely miserable looking young man.

His fever came down to 101 after the shower. He ate his snack, took his pills and went to bed. Casey kept telling me she was going with Regan to Odd Lots and to get a frosty Monday. And she coughed.

By Monday morning, you guessed it – they were both sick. I called the doctor and said I thought he had an ear infection and she had a sinus infection. We had an appointment quickly.

The nurse practitioner took one look and said she wanted to swab them for influenza. I laughed as there was no way either of them would let anyone put anything up their nose. As proof how bad he felt, Rob never moved when the nurse swabbed his nose. Casey jerked away, but the nurse did manage to get a swab.

In ten minutes, we knew. Influenza A for him. Hers was negative, but the nurse said she was sure she had it, too, but in the earlier stage than him. My busy planned week came to a stand still. They were both contagious. I wondered when I would get it.

They slept all day Monday, through the night and into Tuesday. Rob would eat and drink, but she refused. By Tuesday evening, his fever was 103 again and she was in danger of getting dehydrated. I wondered if the hospital would put them in the same room as I paced from one room to the other. (yeah – I know, but I was tired and stressed and thinking worse case scenario).

I’ll admit it. I really didn’t like autism for a few days. I needed to know what hurt, what I could do to help them feel better and thanks to autism, they couldn’t tell me. I knew I needed to watch him for an ear infection and both of them for pneumonia. She was still coughing. He rubbed at his ears. And I paced and worried and mumbled not nice things about autism under my breath.

Before anyone gets a burr under their saddle, I’m not saying I was upset at kids at all. I just got irritated at autism – it was preventing me from helping my kids and I was feeling so helpless. I hate that feeling. I sat and wished he would long black train. I wished she would stomp up the stairs. I wished the quiet would go away. (That proves how stressed I was – to wish for hours of long black train! 🙂 ).

Thank God, both their fevers finally came down late Tuesday and Casey even took a few sips of juice. They slept off and on all day Wednesday and Thursday. We even had a snow day Friday so I didn’t have to miss any more school.

Casey is talking about going with Regan Monday and riding the shuttle to Hopewell. Rob hasn’t said a word. I just keep hoping they are on the mend. They are both sleeping more than usual and aren’t talking much. Eating is still hit or miss and their coughs sound nasty. It isn’t a constant cough, but it hurts me to hear it.

He finally mentioned Hopewell this morning. I asked if he wanted to go or stay home with Mommy again. He said Hopewell, but then coughed again. The doctor said it would be probably a week before they started feeling like themselves and that secondary infections were a concern, especially since autism prevents both of them from telling me that anything hurts. Today is a week.

I wish I knew how they really felt. They are moving around so I guess tomorrow we’ll try to get back to our normal and let them go. They were both upset last week that they didn’t get to go with Bob and Regan after Hopewell and Rob missed his aquatic therapy. Thankfully, the hospital rescheduled him for tomorrow. I just have a feeling that they will both be exhausted by tomorrow evening. Unless their fevers come back, they will go. And I’ll keep my phone close by in case they need to come home early.

Last week just proves again to be careful what you wish for. I often wish for a few minutes of quiet, but when I got it, I couldn’t enjoy it. I hate it when any of my kids are sick, but at least Mandy can tell me what hurts and if she needs to see the doctor. With autism, it’s just a guessing game and while I’ll admit I’ve gotten pretty good at guessing, I don’t like it. I want to help them feel better, not wonder if I’m doing the right thing.

We’ll see tomorrow afternoon if I guessed right about sending them back to Hopewell. I hope I am. I wish they would just say they are too tired to go. Or that they ache. Or that their head or chest hurts. Maybe some day they will – Rob will tell me at times when his ear hurts and he needs to see the doctor. Small steps. And I’m proud of every little step they have taken.

Stay well! Disinfect. Wash your hands. Avoid people and stay home! 🙂 🙂

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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, 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!

 

 

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Autism and Sheltered Workshops

Autism and Sheltered Workshops

I just read another post that stated every sheltered workshop and day hab center needs to close and everyone who attends should find a “real” job.  I’m not a happy mom.

I understand the reasoning behind possible laws stating every able-bodied person should be working and earning a minimum wage.  Don’t they think that I would be pushing for that for my kids if I truly believed either one would benefit from it?  Casey and Rob need Hopewell – it really is that simple.  Does everyone that goes there need it?  No, of course not, but everyone has different abilities.  I just don’t understand why that is so hard for some people to understand.

Casey might…  maybe… possibly… be able to go to a “real” job – with supports, for a short amount of time.  If she wants to and is in the right mood and doesn’t decide that going to see Norma (a senior citizen she has developed a special friendship with) would be a better idea.  Casey doesn’t care about money.  She understands she needs money to buy things, but not where money comes from.  (Mom’s purse!  How it got there, she doesn’t know or care.)

Rob could not, at this point in his life, handle a job.  It’s that simple.  He doesn’t like noises, crowds, strange people or a different routine.  His anxiety levels are finally leveling out (and by that, I don’t mean it’s gone – I mean he isn’t humming, flapping, squealing and stealing paper clips all day long!)  He could not do it.   However, if any politician wants to prove me wrong, by all means, message me.  You can take him for a day – or a few hours – or an hour – whatever you can handle.  Ask the people who work with him every day what they think.

Rob doesn’t care about money, either.  The only thing he wants is to have 3 quarters in his pocket every morning when he leaves.  He never spends them, just likes having the ability to buy a pop if the need arises.  He understands that money is needed to buy things, but he doesn’t care where it comes from, either.

I do understand that there are many people out there who desperately want a “real” job and to make their own money.  There are people who need that job to live on their own or help support their families.  For those people, keep fighting!  Demand your services and what you need.  But, please, do not lump my kids into your needs.  We have our own needs.

Sure, it would be great if Casey and Rob were making money and could pay for the things they want or the places they want to go.  Who wouldn’t want a little extra money?  But it isn’t going to happen any time soon.  Maybe in a few years, they will both want jobs and I’ll move mountains to see that they get what they want.  Until then, don’t take away the place we all need.

Neither of the kids have brought home paychecks in months.  But – they are happy!  They are going places with their friends.  Rob is even interested in exploring new places and new experiences.  Casey can volunteer to her heart’s content.  She can have breakfast with the “girls” club (that Rob always seems to invite himself to!) and paint rocks to make others happy.

She can visit the nursing homes and see Norma or play wii or sneak a drink of pop.  They are going swimming with friends.  Rob will be going back to aquatic therapy soon.  All of this and more is available to them because of the workshop they attend.  I couldn’t do it for them.  I can’t take Casey every where she wants to be and leave Rob at home and he doesn’t want to go.  It just doesn’t work.

What about my job?  As much as I wish I was rich, I’m not and a job is a necessity.  If their lose their day hab services, what am I supposed to do?  They can’t be alone and I can’t afford to pay (their waiver will pay for some hours, but not nearly enough).  So where does that leave us?

I do understand what people are saying about minimum wages and the need for people with disabilities to be accepted into our communities.  I fight for that acceptance every day.  What I don’t understand is why it has to be an “all or nothing” situation.  Why do sheltered workshops or day habs have to disappear so people can have jobs?  It just doesn’t make sense to me.

We stress all of the time about looking at a person’s interests and abilities when making a plan for them, but someone who has never met my kids can make a major life decision?  Yes, please, no fanks as Rob says.  We would never take away a person’s therapy or medication without something to replace it – why in the world does taking away their secure, happy place make any sense?

My prayer is that all of the talk floating around is just that – talk.  Rumors or half-truths that have no bearing.  But, I hear about sheltered workshops closing and families being desperate for help.  I know they are expensive to maintain and finding quality staff can be an issue.  Casey and Rob need Hopewell – and so do I.

Keep fighting for what your family member needs.  Never, ever stop doing that – but just keep in mind that our needs are different.  This can’t be a “one size fits all” decision.

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Autism and the Difficulties in Speaking

Autism Verbal Difficulties

It happened again.  A day that could have been so much fun for Rob was ruined, simply because he couldn’t ask for help when he needed it.  As much as he is able to talk, there are times when his autism and the verbal difficulty he has flare up and he gets frustrated.

Rob and Casey were going swimming with friends from Hopewell – the workshop they attend every day.  I was already a little concerned because they were going to a different pool – one that was just a pool and had none of the activities that Rob really enjoys (mushroom fountains are his absolute love – all the water pouring directly on his head is heaven to him!)

He was so excited to think about going swimming.  I’m sure he was a little disappointed that it was a new pool, but he jumped right in the pool.  Staff told me he got right back out and soon began pacing and yelling.  Tory tried to help him, but he was unable to tell her what he wanted or needed.  He wouldn’t even talk to Casey.

I got a message that he was upset and decided to go get him.  I didn’t want his anxiety to ruin the fun for the others in the group.  When I got to him, he started asking “get the van?  get the van?” so I knew his anxiety was sky high and not likely to come down any time soon.  He didn’t want to leave with me, but he didn’t want to go in the water, either.  I think he probably did want to swim, but since he wouldn’t, I told him to grab his stuff and we would just go home.

As we were driving home, Rob had his hand laying on the open window of the car.  That’s the only way I knew what really happened to him at the pool.  I saw the bee sting.  When I could pull over, I asked him to show me his hand.  “Let me see!  Let me see!” he said and held his hand out to me.  When Rob is sick or hurting, that is how he asks for help.

The stinger was out, but the hand was red and slightly swollen.  I noticed he sounded congested when I picked up him, but thought he was having sinus issues.  Nope – he was having a reaction to the sting.  He and Mandy used to be severely allergic to insects, but he hadn’t had a reaction in a long time.  He had gotten stung at the pool and he simply couldn’t tell Tory he needed help.

Instead, the pain got him worked up and he paced.  And he yelled.  And his anxiety grew.  All because of autism and verbal difficulty.  Can you imagine being in pain and not being able to tell anyone?  Not being able to ask for help?  Imagine the frustration and anxiety you would feel.  And I hated autism again for ruining his fun.

Had he been with Mandy or I, he probably would have said “Let me see” and we would have known something was wrong.  He just won’t (or can’t) say that to others.  So, because of autism, he suffered.  And I thought about the other times he was unable to ask for help when he needed it.  When he jumped down the steps and broke his collar bone.  When his foot issues start to flare up (if I can get ibuprofen in him early enough, the pain doesn’t get too bad).  When his head hurts.  And I think it just isn’t fair!

I know – life isn’t fair.  But it’s so hard to watch someone you love in pain because of verbal difficulties.  He can say so much of what he needs, but not always.  Sometimes, he just yells and gets anxious.  Sometimes, he cries.  Sometimes, Casey screams.  And I’m left trying to read their minds and find the issue.

Autism has taught me so much.  I am a better person for loving kids with autism.  I have met so many amazing people and learned about myself.  Autism has also taken things from me.  For me, the worse thing taken is the kids being unable to ask for help.  When I do finally realize the problem, the guilt comes.

Why didn’t I figure that out quicker?  How could I not realize they are in pain?   My parents tell me that’s crazy – it’s impossible for me to know everything about them.  My head understands that – my heart feels the guilt.  And you know guilt is harder to get rid of.

I’ve learned to “read” them – just as every other autism parents has learned.  I can tell by their eyes if something is wrong, if they are sick, if a tantrum is coming.  I can tell when they are happy or sad or mad.  I can see Rob’s anxiety and when Casey is getting overwhelmed.  I know all of this, but I still feel guilt when I don’t know it soon enough.

Thankfully, Rob’s hand is fine.  While he did cough a little, he didn’t have a bad reaction to the sting.  He will probably never go back to that pool as he will always associate it with a bee sting.  But, that’s ok.  We’ll go somewhere else.  Casey will be happy going anywhere.

We’ll always struggle with verbal difficulties.  I will be thankful for what they are able to tell me.  I will keep asking questions and hope to learn more about each of them.  We’ll keep hugging and laughing.  I’ll read stories to them and enjoy the giggles when Elmo saves the day again.  That’s what parents do.

And I’ll try to push the guilt away when I don’t know what’s wrong.  I’ll try to remember the good things about autism when I’m so sick of it I could scream.  Try to do the same.  Life isn’t always about bee stings and ruined pool trips.  Sometimes, it’s bear hugs and twinkling eyes and McDonald’s fries.