Month: August 2021

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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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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.