Tag: autism mom

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Autism and Letting Go of Expectations

Autism and Letting Go of Expectations

The title may throw you off a little. Before anyone thinks I’ve lost my mind and am letting Casey and Rob run the house, the expectations I’m talking about are the ones everyone has about what a happy life looks like. Autism changes your perspective, but not always quickly.

Many people seem to think a happy life is one with lots of stuff, lots of travel, lots of people around. Big, fancy parties for birthdays and expensive presents for Christmas.

Let me paint another picture for you. Yesterday was Rob’s 29th birthday. I am a birthday person. I love celebrating the person that day – not always huge things, but things to make sure that person knows they are loved and special. With autism, I had to let go of my idea of the perfect birthday and change it to fit Casey and Rob’s needs and wants.

If you ask Rob, my guess is, if he was able to say the words, yesterday was perfect to him. He got to sleep in as long as he wanted. He had his favorite doughnut for breakfast. He had nuggets and watermelon for lunch. He went to Mandy and Cory’s house.

He chose KFC for supper. He had presents that he loved (foam to cut, cards to rip, a new sign, new headphones, McD card and money) and people he loves to have cupcakes with him. He sang “Happy Birthday” to himself. And then he disappeared into his room for quiet time.

For him, it was perfect.

Before autism, I dreamed of parties with lots of kids, lots of noise, games… You know what I mean. After autism, I struggled to change my dreams into a happy reality for Casey and Rob. When they were little, their cousins came to their birthdays, but it wasn’t the same. I dreamed of friends for them.

Mandy had a few parties with friends and Casey and Rob were always included. But I wondered – did they ever wonder why she had so many friends and they didn’t? Did they feel lonely? Casey has always been more self-confident and has never seemed to care about having friends. As long as she gets to go places, she is happy. (and by places, I mean – to the park to walk or to the pool – nothing too fancy 🙂 ) Rob has always wanted the approval of others. And still does – that’s why anxiety is such an issue for him.

Autism will change your idea of what is fun, too. If you let it, autism can be an amazing teacher. Living with it will show you that what kind of car you drive isn’t important, as long as it gets you where you want to go. It will teach you that new and different foods aren’t that important and that there is comfort in sameness. Autism will slow your life down. You will learn to love and brag about the smallest steps forward your child takes – and you will appreciate those steps more than many “typical” parents will, simply because you know the struggle it took to get there.

My expectations of huge birthday parties has changed. Holidays are different than I thought they would be when I had kids. I don’t take long vacations anywhere. I don’t have a date when I will be “free” and the kids living on their own. I know every one of you has dreams for your child – expectations you planned on. Maybe you thought you would be sitting in the stands watching your child play football. Maybe you thought your child would take center stage in a musical. Don’t give up those dreams, entirely – just adjust them. I constantly tell people they have no idea what life will be like for their child. You simply can’t know. You do your best with the information you have and you move on.

I never want you to give up on your child. Push them to try new things – to look away from the iPad – to taste a new food – to wear a new shirt. Small things add up quickly.

But – I also don’t want your expectations of what life would be like for your child to get in the way of what an amazing life you can have with autism. Autism is tough – you will never hear me say it’s easy. There are days you will want to cry and scream and give up. I know that. But – there is something good in every day, if you can stop the tears long enough to really look. Change your expectations of what a happy child looks like and you may see that your child is very happy right now. And if your child is happy, you have done a wonderful job as a parent. Pat yourself on the back!

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Autism and Going Back to School

Autism and Going Back to School

Mandy wasn’t always happy about going back to school, but for the most part, Casey and Rob were. Rob wasn’t happy when he had to go for two years without his sisters, but he loved his teacher and the aides in the classroom, so it wasn’t much of a battle. But – for me, as happy as I was to have some breathing time alone, it was scary, nerve-wracking and intense. Honestly, I worried just as much about Mandy as Casey and Rob.

They had aides and I knew their teachers well. Because of their autism, people were always watching out for them (the fact that Casey run off the school playground more than once made everyone aware that she needed eyes on her at all times – and they just assumed Rob would be the same way!) but Mandy – she was so little and so alone. She knew kids in her class and I was on the PTO so was in her school often, but still…. I worried about her.

So I’m sure you are feeling it – whether you are a teacher, an aide or a parent – back to school nerves. I won’t lie – I’m relieved it’s not me, anymore! We were lucky and only had one teacher that caused major issues and another that was a pain in the butt, but by then, someone like her couldn’t phase me. 🙂 Rob always had amazing teachers and aides. Mandy has said the school district decided they didn’t want to deal with me anymore, so they put him with teachers I knew and liked. I seriously doubt it, but – I was never shy about fighting for the kids, so maybe…. 🙂

Anyway – my best advice for back to school with autism.

  1. Prepare your child. Only you know the best way to do this for your child. For us, I made paper chains to count down the days until school. Casey understood the calendar, but Rob still can’t be bothered to look at one, so this was a good visual for him. I talked about school all the time and made sure they were with me to pick out supplies – not just to prepare them for school, but so they could get exactly the back pack and lunch box they wanted.
  2. Prepare the teacher. If your child has had this teacher before, obviously, this is an easy one. You can simply update the teacher with any new quirks your child has developed. If you have never had this teacher, then make a list. Yes, you will have back to school paperwork to fill out, but this is different. Write down what your child is afraid of – loud sounds? the restroom? crowds? storms? Write down what sensory issues your child has – heat/cold? certain foods? Clothing/shoes? Write down what your child does when he/she is beginning to get overwhelmed – rubbing ears? flapping? rocking? humming? Write down what helps your child calm down – a quiet place? A hug? a favorite books? a walk? The more info the teacher has, the better the year will be for all of you!
  3. Once school has started, get in the habit of texting the teacher if there is anything going on at home that could bother your child at school. Didn’t sleep? Didn’t eat? a sick sibling? Anything! I know so many people that want to keep things private (a divorce, a death) but it will help your child’s teacher and that will help your child. Don’t expect a long text conversation, as the teacher is busy, but let them know. The more information they have, the better the outcome for your child.
  4. If you have a lot of info, send an email. Don’t call the teacher, unless you have been given a safe time to do this. If your child is in a regular ed class, teachers have 20 – 30 kids (and no aide to help!). A special education class is smaller, but with so many different needs, the teacher is swamped. Only call for an emergency and if possible, leave a message, such as you are on your way to pick up your child. It’s rare, but if the teacher consistently doesn’t answer you, ask why. Always talk to the teacher before you badmouth them to the principal. Be an adult and hope the teacher is, too. There is always time to go above the teacher’s head if you can’t work it out. Be kind, first. Always.
  5. Take your child to the school. Make sure they know where their classroom is, where the bathroom is and to meet the teacher. Take pictures of everything and make a book to read to your child. Casey’s preschool teachers took pictures of anything she might need at the school and made a book for her. She looked at those books until she got to junior high when they finally fell apart.
  6. Talk about school. Even if your child isn’t verbal, they are listening. Talk, talk, talk. Tell them happy stories from when you were in school.
  7. If you have concerns as school goes along, email the teacher with your concerns. Phone calls are nice, but hard to schedule. Give the teacher a day or two to respond, then call and leave a message.
  8. When there are problems, be nice. Always, always be nice. Until it’s simply time to not be nice. Then be politely un-nice. 🙂 Yep – I know that sounds silly, but – you can be firm and demanding without being a jerk about it. Your child has rights and you need to make sure the school understands you know those rights. (If you aren’t sure, take another parent or a parent advocate to meetings with you. Or ask your county board of developmental disabilities for a service and support coordinator) And understand, there will be times when you can’t be nice. And that’s ok, too. Just be nice as long as you can – then be ready to rip into whoever needs it.
  9. Say thank you. You have no idea what it means to an exhausted teacher to know they are appreciated and that you do know how hard they work. A short note, a small gift – anything will be deeply appreciated!

You are your child’s strongest ally and advocate. When you feel like giving up (and you will), have a good cry or tantrum, and move on. You can do this, I promise! If I can fight for years for Casey (and Rob, to a lesser degree, – he didn’t have as many serious issues, just lots of milder ones!) you can, too!

Good luck and make this the best school year, ever! 🙂

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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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Celebrating the Little, Big Steps in Autism

Celebrating the Little, Big Steps in Autism

It’s been a week of so many little, big steps for Casey and Rob. I say “little, big” because to most people, these steps forward are not a big deal. To an autism family, little steps sometimes take years to see – they are big, huge, amazing steps!

One of the funniest steps forward is seeing Casey use emotions Thursday evening to try and get what she wanted. When I picked them up, she was happy and giggling. A little while later, she was crying and telling me she didn’t want to go to their day hab the next day.

Nothing I asked could help me understand why she so badly didn’t want to go. I messaged staff and was told she had been happy and engaged all day – nothing had happened. Casey kept sniffling with teary eyes saying “No Hopewell tomorrow.”

I finally stopped asking her questions and hoped she would calm down enough to tell me. And she did.

She looked at my calendar, saw I had an appointment Friday and she wanted to go to Hobby Lobby, not Hopewell. 😳 I was so happy she was finally able to tell me – and use the right emotion (sad)! I told her I wasn’t going to that store and she happily went to Hopewell Friday.

Saturday was a car show that Casey had been reminding me about for weeks. She was so excited to go, but she was able to understand she needed to stay with Grandma and Grandpa before we went. She even stayed happy and calm when that visit stretched longer than I planned.

As we left their house, Rob started his “on the way home” phrase. He says it 13 times whenever we get in the car to come home. (He only does this with me – for everyone else, he stays quiet until he gets home and then starts repeating it… 13 times!) We got to the car show before he was finished and he was able to stop! This is huge! His OCD requires 13 repetitions of his phrase and he controlled it.

He quietly finished his 13 times as we walked back to the car after the show. 😊

The car show was on Main Street and we were able to walk around looking at cars without the fear that one or the other would take off. Casey even walked about half a block by herself to say hi to friends of ours! Mandy, Cory and I were all watching to see if she would go to them and stop and she did!

The look on Lyn’s face when she saw Casey by herself was priceless! I walked over to them and gave Casey a big hug and told her how proud I was. She looked at me like I was nuts, of course. 😊

And today… We went swimming. But even better than that, all three of us played ball together for a long time in the pool. And when I got out, Casey and Rob played together! I sat on the edge of the pool and thought about the years when I couldn’t take them to a public pool without a lot of help. Look at them now!

And when it was time to go, they got out of the pool without a fuss. Again… Not too many years ago, that wouldn’t have happened. I would have been telling them 20 minutes left. 15 minutes left. 10 minutes… And so on… And probably still would have had issues.

So…. Brag about everything your child does. Who cares if it’s a skill they should have mastered years before? Brag about it to everyone! The people who truly care about your child will be as excited as you… And the ones who aren’t excited… Maybe they don’t matter as much.

Because, just like everyone else, your child with autism knows when you are proud and happy and excited. They may not be able to communicate with you, but they know and hearing you brag to everyone about a new skill they have learned is just as important to them as it is to a “typical” child. Shout from the rooftops! And be sure to let me know – I’ll spread the word and we’ll all cheer for your child! 🙂

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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 the Importance of Self-Care

Autism and the Importance of Self-Care

If you’ve ever been on a plane, one of the first things you hear is if the oxygen masks come down, put yours on first – you can’t help anyone if you don’t take care of you. It seems like a reasonable plan. But, would I do that? Put mine on before I helped Casey or Rob? Hmmm…. the only reason I’ll say mine goes on first is that Casey and Rob will never be on a plane. 🙂

Honestly, though, I do have a hard time with the whole self-care thing. I know the last several months, especially, I let go of things that I truly love doing because I never seemed to have time. I was busy with both jobs, with Casey and Rob, with helping Mandy and Cory move… I can make all the excuses I want, but the reality is, I have a terrible time taking time for me.

When school finished for the year, I decided that if I was truly going to live until I’m 120 (my goal so Casey and Rob will be close to 100 and will hopefully never have to live without me 🙂 ), I needed to think of me, too. I still struggle with it, but I’ve been reading every day and exercising more. I’ve started doing Yoga again and am trying to eat healthier. I am working on my crafts again and remembering how much I love creating things. Do I feel guilty about this? Yeah, sometimes.

Sometimes, as I pick up my book, I think I should be sending pitches for more writing jobs. I should be calling this person or that one or knocking a chore off of my to-do list (by the way, do chore lists ever disappear? Every time I think I’m catching up, more stuff gets added! 🙂 ) I beat the guilt back by reminding myself a stressed out person won’t live to be 120.

But – it’s not easy to put yourself first. My kids will always be more important to me and it seems there is always something I can be doing with or for them. I could be swinging with Rob or having an endless conversation with Casey. I could be building with Legos or making color by numbers for Casey. We could be practicing with their communication apps. We could be hiking together. And the list goes on.

I’ve burned out a few times in my life. Luckily for me, I just end up an exhausted, crying mess. I don’t have health issues – just emotional ones, so far. And please God, may that continue. The thing is, I know when I’m getting close to burning out. I know that when I crash, I won’t be any good for Casey and Rob. I know I need to take a break and do something for me. I know all of that – and yet, I still don’t always consider my own needs as being that important.

It’s crazy, isn’t it? To know I’m coming close to a meltdown and just keep running towards it. Do any of you ever do that?

I remember one time several years ago that I completely burned out on a Sunday morning. I couldn’t figure out what we needed to do to get ready for church. Really, I just couldn’t think. Thankfully, Casey and Rob are so routine based that they got themselves ready and we made it to church. I saw my parents and started crying. Big, ugly sobbing …. and I couldn’t stop. Casey and Rob went to their class and I sat in an office with my parents and cried. I was so tired, I could have gone to sleep right there. The sad thing? My parents wanted to take Casey and Rob home with them so I could have a break and I couldn’t agree with it. I just kept saying I was fine and I just wanted to go home.

Even in the middle of a breakdown, I couldn’t just say I needed help. I’m nothing if not stubborn. I finally agreed to go back to their house and take a nap.

Don’t be like that version of me. You won’t get any extra points in life for not accepting help. For not asking for help before you burn out. You know what you will get? Gray hair, ulcers, and an unhappy life. Autism is tough, even on the best of days. Ask for help before you burnout.

Self-care really is that important. If you crash, your child will crash, too. It’s that simple. You won’t get a gold sticker by doing it yourself. I know how full your days are. There is always something else that needs done or someone that needs help. It won’t end. Only your attitude can improve. You have got to take care of you. Consider your self-care as important as your child’s care.

The picture with this post? Yes, those are my feet as I lounged by the pool – all by myself. For the first time since I became “Mommy Jen” I went to a pool by myself. If I can learn self care, you can, too!

Find ways to relax and remember what makes you happy. Don’t make excuses about not having the time. If you don’t make the time to take care of you, you will crash and burn – and you will take your child with you.

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Autism and Tough Choices

Autism and Tough Choices

You know that I’m a big supporter of letting people with autism try new things. Whatever Casey and Rob want to try, I do my best to find ways to support and encourage them. However, there are times that I have to make tough choices – and they usually break my heart. I hate mom guilt.

Yesterday was my niece, Anna’s, graduation party. It was held at a place Rob was somewhat familiar with, but there was going to be a big crowd of people he didn’t know. Plus, the weather here has been unstable, to say the least, for the last week. Plus, it was hot and humid. Casey couldn’t wait to go – she had gotten a new shirt, just for the party. I knew Rob would not enjoy himself. I knew it. While I’m all for pushing them to try things, I also don’t set them up to fail. He may have been fine, as I wouldn’t have been there long. But, my gut told me I was asking for trouble. I knew his anxiety would go sky high as soon as he saw so many strangers.

The problem was – he heard Casey talking about Anna and Uncle Jeff and Grandma Rose and Grandpa Mack. So he started asking, too. I tried to explain to him that the party wasn’t at Uncle Jeff’s house or Grandma’s house. But he kept asking. And I felt like crying. I knew he wouldn’t enjoy it – but how could I explain that to him? When I’m always telling them both they can do anything if they would just try?

Enter – Mom Guilt.

Because, the reality is…. I knew it wouldn’t go well. And I just didn’t want to have to handle it.

Not that he would have a meltdown or run away. He would just get loud… louder…. louder…. maybe scream coffee cup or one of his other phrases. I knew Anna would be fine if he did – she’s an amazing young woman. I knew my brother wouldn’t care. But – sometimes… I just don’t want to be put in that position. So, mom guilt set in. I went back and forth arguing with myself.

In the end, I told Rob it was hot and it would be crowded. He asked for Uncle Jeff. I told him he wouldn’t be able to be in the house by himself – he would have to stay outside with me. He asked for Anna. I told him he would have to put a good shirt on. He asked for Grandpa Mack.

I didn’t want him to think I just didn’t want to take him. I’m proud of him! But – I also knew it wasn’t going to be fun for him. This is the hardest part of being an autism mom – the lack of communication. Did he understand that I knew he wouldn’t enjoy it or did he think Casey was more special than he was? So I cried some more.

In the end, I pulled out the big guns. I offered him a deck of cards to rip up and a Big Mac and fries. He stayed home. He was happier there. But I was almost in tears as I pulled out of the driveway. I never want my kids to think they aren’t welcome to go anywhere with me. I wanted him to understand that I knew he wouldn’t enjoy it and that’s why I was making other arrangements for him. But still….. autism isn’t easy.

It was good to see everyone at the party, but I couldn’t really relax. Even though I knew Rob was happily ripping up cards and waiting for his McDonald’s. Casey happily filled her plate with delicious food, watched kids for a few minutes and she was ready to go. We got Rob his supper and went home.

He seemed ok – but it still nags at me. Does he really understand that I would have loved to take him if I thought any part of it would be an enjoyment to him? If it hadn’t been so hot – if the weather didn’t already have him anxious…. the list goes on. The reality is, I know I did the right thing. But it still sucks at times. Mom guilt. Don’t you love it?

And – only another autism parent really gets how hard it is sometimes. People understand it’s hard. The people closest to us understand a little more as I’ve cried on their shoulders. But – really, only another autism parent truly understands that pain of not knowing if their child truly understands you are making a tough choice that is better for them. Communication… you don’t think about it much, until you don’t have it.

So – I still stand by my advice to always let your child try – as long as there is a possibility of success. Yesterday, Rob had too many things stacked against him. He may have made it through the party without any yelling, but he wouldn’t have liked it. He would have been stressed and anxious – and we would have paid the price when we got home.

So – let them try. But follow your gut instincts. And – don’t be afraid to just say your children are staying home because you need a break. It’s allowed. And it’s important.

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Autism and Family Fun

Autism and Family Fun

Today has been a good day. It’s one of those days that, when Casey and Rob were little, I never dreamed would happen. These days do happen more often now and I thank God for that as I’m so grateful to see Casey, Mandy and Rob having fun together, with autism present, but not the main thing.

Mandy and I decided to take Casey and Rob swimming today. The pool is small, but close to our house and Casey and Rob both enjoy it. (Honestly, I think he does more than her. She likes to go anywhere – and instead of focusing on how great the water felt, she was wondering what snacks we brought. 🙂 ) He wants to run and jump in as soon as we get there, but I make him walk down the steps so he doesn’t land on anyone. 🙂

He got almost to the bottom of the steps and fell in the pool like the Lipton tea commercials – the person falls flat in the water? And then he was off to “his” part of the pool. He had his ball and an empty area – he was in heaven. He was sitting under water and bouncing up and down as high as he could go. Water is amazing to him – the pressure calms him down and he loves the feel of bouncing. Water play is sensory heaven to him.

Mandy was watching them while I went to get more sun screen. When I came back, I saw a funny look on Rob’s face. He looked at me, then back to the other side of the pool and I saw why he looked odd. His aquatic therapist, Erin, was there! He was amazed that she was at that pool and not in “her” pool at the hospital. Even after we got home, he was giggling about Erin being at the pool. And reminding me that tomorrow is Erin day and he needs his swimming stuff in the morning.

One of the best parts of the day was that Rob wanted to play catch with me! I’m not sure when we played the last time – and I know it wasn’t for more than an hour like today! Every time I thought he was done, he asked for more. I loved it! And then, to make it even better – Casey played catch with him! They only played a few minutes, but again, I don’t know when the last time they did an activity like that together was. (They do things together, but often, they are together, but not necessarily interacting with each other.) I looked at Mandy and told her that no one else in the pool realized they were in the presence of a miracle. 🙂

I share this with you to remind you again that you have to keep trying to take your child to new places. Trust me – I know it’s easier to stay home when there may be a meltdown, but your child will never learn to adjust and cope with their sensory needs if you don’t give them a chance. I’m sure a few of you are thinking that I have no idea what your child is like and you are right. I can only tell you that Casey and Rob both had major issues with stores and restaurants when they were younger (and still do, at times!) but they have learned how to cope.

They only learned that by trying and failing and trying again. We had some ugly times in stores. We got some terrible looks and even worse comments. And, I’ll admit, there were times I didn’t try, simply because I was tired and couldn’t deal with it. There are still times when I know Casey or Rob is having a rough day that we avoid going out. It’s just not worth it. If your child is already stressed, trying something new is rarely a good idea. And don’t try when you are tired or stressed.

But – try again. And again. You will have bad times. We did. You will gets mean looks and comments. We did. But, Casey and Rob are doing amazing now because we did keep trying. We celebrated the good trips and tried to forget the others. It’s not easy. Autism is not easy, Being a parent is not easy.

Start small. Maybe a five minute trip into a store to get something your child loves. Build up into longer trips. Celebrate the small victories and plan your next trip. You can do it! Your child needs you to do it!

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Why Understanding Sensory Needs is Important

Why Understanding Sensory Needs is Important

Now that we’ve covered all of the senses, I want to talk about why it is so important that you understand how these sensory needs truly affect a person with autism. Every day, our bodies (and brains!) are constantly dealing with noises, tastes, smells, etc. Some days, it’s exhausting – think how tired you might be after being in a noisy room for a long period of time.

Now imagine this. You are in a crowded room with several people wearing different lotions, perfumes or colognes. The lights are flickering (maybe only you notice this!) and your shirt is itchy. One of your socks is slightly twisted, so the seam is across your foot and it hurts. The noise of people who are constantly shifting in their seats or tapping their fingers or swinging their feet is enough to drive you crazy. Then, the fire alarm goes off and the pain from that sound is excruciating. To top it all off – you are hungry and you can’t tell anyone what you need.

How would you react? Would you be able to sit calmly and listen to the teacher read a story? Could you focus on a test where the letters seemed to be dancing on the page? Would you be able to color a picture when you aren’t sure how to hold the crayon because your fine motor skills are so affected by autism?

And this is just a very small thing that people with autism deal with every day. This, on top of the desperate need for routine – the need for things to be in the “right” place – the need for kind people to be around you.

No wonder so many people with autism have meltdowns. (Not tantrums – we’ll talk about the difference in meltdowns and tantrums another day) Their bodies are so overwhelmed by the sights, sounds and smells that are always bombarded them that it’s hard for them to stay calm. Imagine trying to sleep when all you can hear is a faucet dripping or the strong smell of fabric softener?

It took me a long time to truly understand Casey and Rob’s sensory needs. I finally happened to hear about sensory issues at a conference I attended and it was like a slap in the face to me. So many things started to click! How Casey was terrified to be in the bathtub when the water starting draining out. How Rob had to wear the same type of shirt (this was in elementary school – had to be a certain brand from Wal-mart). How he squeezed his jaw when he was getting overwhelmed. How neither could eat in certain restaurants (the noise of the HVAC).

Why stores were so hard for them. Why he refused to eat certain foods and why neither of them could sleep. Why he never noticed things that were hot and why she refused to go in the gym at school.

Once I knew why things were happening, it made a huge difference in our lives. It took a long time (and things change – we are constantly on alert for what may cause either of them pain or discomfort) to really understand that they weren’t just being little turkeys when they avoided something. They were truly in pain. Noises are still hard for both of them. Last night, we went to a parade my niece was in and Casey and Rob both got tense when they saw the fire truck coming. She put her fingers in her ears as soon as she saw it and he followed her lead. (My mom covered his ears for him, too – he loves the trucks, but their air horns are extremely painful to him.)

When you start noticing behaviors with your person with autism, think outside the box. Consider any new laundry soap or shampoo (for them and you!) – anything with a scent that they might find too strong. Think about the lighting in the room – is it flickering? Consider the temperature – you may be comfortable, but they might be too hot or too cold. Really notice the noise level – and remember that the noises may not be ones that you can hear clearly, but the person with autism can. They might be loud noises or very low, like HVAC systems.

The best way to discover what might be going on is to start a journal. When a behavior happens, note where/when/who was around. What clothes they were wearing. The activity they were doing. Do this for a few days and you may see a pattern. Maybe they are frustrated because they can’t hold their pencil. Maybe they are hungry. Maybe the person next to them smells funny (I don’t mean this to be mean – the person may use a different soap or maybe they smell like the French fries they had for lunch. Just because a scent doesn’t bother you, doesn’t mean it won’t bother your child!)

Many behaviors we see with autism could be sensory needs. A child who runs away. A child who won’t eat. A person who can’t sleep. A person who avoids a certain room. It takes a lot of work to discover the reasons behind behaviors if your child can’t tell you. Sometimes, they can – Casey and Rob couldn’t and still won’t. We have just learned what issues they have, avoid as many as possible and are ready to help when sensory needs pose problems.

Please – when your child starts a new behavior, consider sensory needs as a possible cause. Of course, sensory needs won’t always be the cause, but in a majority of cases, I bet they are at least a small part of the problem.

I also bet that you have some sensory needs yourself. I know there are certain materials I won’t wear and scents that make me gag. Think about it – I bet you have learned what bothers you and you just avoid it. But what if the adults around you make you do things or go places that are painful and you can’t tell anyone? It’s meltdown time!

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Happy Mother’s Day!

Happy Mother’s Day

Happy Mother’s Day! 💙

To the moms who are still waiting to hear their child say “mommy” and the ones who hear it all day long.

To the moms who fix chicken nuggets or pizza every single day.

To the moms who are still helping their adult children with baths and showers.

To the moms who stay up late to make sure their child gets home safely.

To the moms who function on little to no sleep because their child doesn’t sleep.

To the moms struggling to keep doctors’, therapists’ and teachers’ names straight.

To the moms of escape artists who can open any lock known to man.

To the moms of dare devils who fear nothing.

To the moms who are crying in their pillows at night.

To the moms trying to think of every sensory issue their child has when they dare to leave their home.

To the moms watching their child’s meltdowns, knowing there is nothing they can do but keep them safe.

To the moms who are constantly worried about “when I’m not here, who will love my child?”

To the moms whose child desperately want friends, a job, to drive, to have their own home and don’t understand why they don’t.

To the moms of newly diagnosed children who don’t know what to do first.

To the moms who are tired – the same foods, the same routine, the same clothes, the same… The same… The same…

I know there are times you feel like the world’s worst mom. You forgot this – you are too tired for that – you got irritated at the constant verbal stimming – you can’t find the only brand of chicken nuggets your child will eat.

But – I also know that no matter what, you are awesome and amazing and stronger than you think.

Trust me. I know lots and lots of moms who don’t realize how amazing they are. You are one of them.

So, today is your day! Smile, take a deep breath and know your child is more than a diagnosis and they are lucky to have you as their mom! Keep reaching for those dreams!