Category: autism parenting

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Autism and Another First Time

Autism and Another First Time

I’ve always told other autism parents to brag about their kids – brag about every small step they take! Who cares if it takes them a little longer to master something? The point is – they did it! And you deserve to cheer for them just like every other parent.

Today – it is my turn to cheer again! Well, mine and several other parents. Yesterday, I got to go to the movie with Casey, Mandy and Rob! We’ve gone to drive in movies several times, but Rob has never been in a movie theater. It’s just too loud and his claustrophobia can get bad in dark places, especially with a crowd.

Our local movie theater did a sensory friendly movie. They have done it before, but we had never been able to go. A sensory friendly movie means the lights aren’t completely dark and the sound is kept lower. Talking during the movie isn’t a big deal (Or squealing, hooting, or humming!) Moving around is fine (as long as the moving around doesn’t put anyone else in danger) It was the perfect time to see if Rob would enjoy it.

Casey has been to movies before and seemed to enjoy, but she did get antsy and want to go to the bathroom or anywhere else besides sit and watch. When we got to the theater, one of their friends was there, too, so we could all walk in together. They each got popcorn and a drink. I turned around and had lost Rob, already – he didn’t even wait for me – he just walked into the theater. 🙂

I let him pick the seats, sort of, as he was going to walk clear to the front row. He had a struggle with the seat, as he couldn’t figure out how to sit on the folded seat. He finally put his drink in the cup holder and carefully sat down. Casey panicked when the seat rocked back and jumped up. She wanted to move because she thought her seat was broken. I told her to just slowly lean back – that the seat rocked and she was finally able to relax in the seat. But, it showed again that we need to show our people with autism new things – not just expect that they will try it because we say it’s fine. I had to hold her popcorn and her hand before she was able to relax. And, that’s fine – it’s just something I forget at times. Even as brave as she is, she still gets nervous and needs my hand to feel safe.

Rob loves popcorn and that kept him entertained until the movie started. The owner of the theater came in and told us the sound guy was going to turn the sound off completely and slowly turn it up. We were to tell her when it was okay so everyone would be able to enjoy the movie. This is another reason I love living in a small town! How many big theaters have that kind of service?

Rob was completely relaxed through the movie and often had a grin on his face. I got worried about him once, but it turned out he needed the bathroom (and, of course, so did Casey! 🙂 ) and he watched the rest of the movie happily. I wish I could have gotten a picture of him watching – he looked so happy and relaxed!

Honestly, I was ready to cry. So many times when I took Mandy and her friends to the movie, I wished Casey and Rob could go. I wondered if they would ever be able to enjoy things like movies. Yesterday, I got my answer! True- it took 29 years, but it happened and I’m still so excited about it!

I’ve said it before and I’ll remind you again – never, ever stop dreaming for your child with autism! As long as you keep dreaming, your child will keep trying. Isn’t that what all parents do? 🙂

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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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“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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The Difficult Dance of Parenting Autism and Typical Children

The Difficult Dance of Parenting Autism and Typical Children

Being a parent isn’t easy. Besides the typical day to day care, you are also responsible for helping your children grow into loving, kind, responsible adults. And when you add autism into the mix, it becomes a dance of never letting the typical sibling feel like their sibling with autism is more important than they are.

I’ve heard so many horror stories of the typical sibling ending their relationship with their parents so they can avoid being around the special needs sibling. Or, in the case of one family I know, they ask their elderly mom to move closer to them – but only if she puts their special needs brother in a home and not go visit him. I simply can’t imagine that kind of pain.

While Mandy is quick to say that she never felt resentful of Casey and Rob (except for when they took equine therapy – she was obsessed with horses and wanted to ride, too! Thankfully, the stable allowed her to ride at the end of the sessions, but I never felt like it was enough), I remember times that she was mad at them and for good reason.

Rob cut apart a necklace that was very special to her. Casey chewed the feet off of all of their Barbies. Rob chewed the horns off of her unicorns. Casey (the girls shared a room) wasn’t as interested as Mandy was in having a clean room. Rob did this – Casey did that. And every time, my heart broke for Mandy. All I could do was tell her they didn’t understand. In the case of the necklace, I was exhausted, stressed – and I didn’t handle it well at all. Mandy was furious – I simply couldn’t handle it…. and I told her she shouldn’t have left it where he could get it. Knowing even as I said the words, she didn’t leave it lying around. Knowing I wasn’t handling the situation right at all. And knowing I would be crying ugly tears that night in bed. I was failing her.

That being said, Mandy was also the first to defend Casey and Rob. And when she lost her temper, she was a force to be reckoned with. She might have inherited my temper – seeing someone treated unjustly still brings out that side of her. And I’m proud of that. I got a call when she was in 6th grade. A brown=nosing classmate told the teacher Mandy was mean to her. The teacher, assuming Mandy would never tell me she had gotten in trouble, called me. Mandy told me right away what had happened – and it was nothing like the teacher had been told.

The teacher felt I should take Mandy for counseling and possible medication for her “anger issues.” I’m sure after our conversation, that woman thought I needed the same, but I let her have it. Mandy admitted she did call the other girl a name – but only after the classmate made fun of another girl in their class. I also got a call from the high school once. Mandy happened to overhear a boy calling Casey a name – and again, she let him have it. She was called a bully – the boy was ignored. I told Mandy I would always stand behind her. If she got suspended for standing up for Casey or Rob or another student, we would go shopping and have a fun few days.

But – it was hard. For most of Mandy’s special events, many times, only one parent could be there. When possible, I left Casey and Rob with my parents or Tracie so we could both be there for Mandy. I hated missing things and was so worried she would start to resent autism. She denies thinking this – it’s just my mom guilt talking.

I tried to remember all of the ways my parents made my brother and I feel special and did them with Mandy. There were times I told her she looked “sick” and I called her off school, sent Casey and Rob and we went shopping. They were sent to bed earlier and we stayed up watching movies. We played games. Anything I could think of that would be special memories to her. It wasn’t easy and still feel the guilt of sitting at the top of the stairs playing horses or Barbies with her so I could still hear what was going on downstairs. I hated being torn and not being able to completely focus on her. She says she doesn’t remember it that way – and I thank God for that.

I know you are exhausted from the 24/7 care for your child with autism. But, please, find little ways to let your other children know they are just as special. Put notes in their lunch box. Text them. Play games. Skip school. Put everyone else to bed early. There are a million little ways to let them know that you are always thinking about them. Take turns with their other parents doing something special. Or ask a grandparent to stay with your child with autism. (Yes, I know finding someone you trust to stay with your child with autism is hard – sometimes, impossible – but it’s so important!)

At our autism support meeting last week, it was suggested that at our next meeting, we talk about how to help typical siblings understand their sibling – how to parent both. Mandy spoke up and said she hadn’t felt any less important or special than Casey or Rob – that she didn’t resent them at all. I’ll admit – I had tears in my eyes. I don’t know how I did it, but somehow, I got lucky enough that she grew up feeling important, cherished and loved.

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Autism and the Art of Taking a Trip

Autism and the Art of Taking a Trip

Casey has been asking for months to go to a water park beside the zoo and I kept telling her no. Honestly, the park is big, it’s open and it’s terrifying to think about taking them there.

The reality is, I would need at least three other adults to go with us. Rob likes to explore, but once he finds a place that will continually dump water on his head, he pretty much stays there. But, with autism, you never know, so two adults with him at all times.

Casey wants to try everything. It doesn’t matter if it scares her to death – if it is there, she has to try. While I’m so proud of her for going outside her comfort zone, that also presents challenges. For water slides, someone has to go with her to the top and someone at the bottom. No exceptions. When Mandy and I took them to Sesame Place two years ago, I was right behind Casey on slide and in that ten seconds, she disappeared.

It seemed like hours before we found her – in line to ride again- but really, it was only a few minutes. My head knew she was right there somewhere, but my heart was pounding. And, Mandy needed to stay near Rob, so it made looking for Casey even harder.

But, it’s hard to explain to Casey why that water park is not in her future. I’ve told her that’s it too big and not safe, but she says “adult!” Yes, Casey, I know you are an adult, but… How do you explain she is a child in an adult body? How do you explain that you are scared to death someone will hurt her? Neither Casey or Rob can comprehend that.

So, as a compromise, we went to a Great Wolf Lodge near Lake Erie. We could kill two birds with one stone – her water park and his love of the lake. They were both excited, but if you’ve ever taken a trip with autism, you know the planning is crazy.

I looked at pictures and reviews of the lodge. I requested an early check in with a room on the first floor at the end of the hall. I thought of every thing they might need to be safe, happy and able to sleep.

I let them pack blankets – one for her, four for him. And their pillows. And iPads. Snacks. Breakfast stuff. Big Bird was the lucky one chosen to go with us. It’s funny watching them choose clothes. I have to talk her into taking any extra ones. Rob? He packed for more than a week – every red shirt he owned, plus a few more.

I thought and over-thought every detail. Went over every possible thing that might happen and tried to prepare. And thought, without autism, we would have had a duffel bag, cooler and bag of snacks instead of a trunk full of stuff. I worried about the staff at the park. Would they be patient? Would they be helpful? Would they be kind? (For the most part, the answer is yes to all… But they could use a little training with special needs).

We did have a few bumps, but mostly, it was a great trip that they both enjoyed. It took a lot of planning, but it was definitely worth it. Traveling with autism is never easy, but I have learned that many places are ready and willing to accommodate your needs – you just have to ask! If somewhere isn’t willing, then go somewhere else. Special needs families don’t need to hide or be ashamed!

Let the world see and hear your family. Every time you do, you encourage other families to do the same and you open the eyes of people around you. Only good can come from that! 😊

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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!