Author: jsjones116@yahoo.com

Jen is the mom of three amazing adults. Her oldest daughter and her son both have moderate autism. She is a freelance writer who is passionate about spreading awareness and hope to families with special needs.
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Autism and Changing Medications

Autism and Changing Medications

Casey and Rob both got glowing comments from their doctor last week. He was so happy with their progress and loved that when he walked in the room, Casey looked up and said, “Hi Max!” (his first name! 🙂 ) I reminded her that she needs to call him Dr. Wiznitzer, but he laughed and said she could call him anything she wanted.

During their visit, we decided to try lowering Casey’s medications again. We made a huge jump over the last year in the amount she takes and are hoping she can continue to wean off of it as it is one that can increase her appetite. She doesn’t seem to have an opinion one way or the other, but when I told her Friday morning she only needed half of the pill, she looked at me and said “Not sick?” Honestly, that broke my heart – that she has been thinking she needs to take pills because she is sick.

So we had a short and sweet talk about how taking pills doesn’t always mean you are sick – that sometimes, pills help your brain work better. I told her the white pill helps keep her from getting upset. She couldn’t have cared less – she only wanted her yogurt and her iPad. But, at least I tried.

I knew the doctor would want to talk about reducing Rob’s, too. He’s been pretty stable for about two years, so it was time, but man – I’m worried. His anxiety can be ugly and painful and I’m honestly scared to death about lowering one of them. But – I don’t want him taking medications he doesn’t need anymore, so we’re going to try. Slowly. Right now, three of his medications can cause weight gain, so for his health, we need to lower them, if possible. Slowly. Can I repeat that?? Slowly!

Finding the right dose for medications is so hard. Most of the time, several medications need to be tried until you find the one that works without making the person feel “off.” And then increasing the level until you see they are helping. It’s a frustrating process.

And lowering them is just as hard. How do I know if Rob’s anxiety is caused by the lower dose or the full moon? Or the wind? Or something that happened that he can’t tell me about? How do I know if he is talking more because he’s trying to ease anxiety or just because it’s a beautiful day and he wants to sing? Is Casey getting irritable because of the lower dose or is she just having a bad day? (And – let’s not forget – autism or not, people have bad days!)

I know that I won’t see any difference in them, yet. It’s only been a few days and the medications need to work out of their systems, but I’m dreading the next few weeks. I’m tired just thinking about it. Should I be? No, of course not – all I have to do is give them their previous doses. The doctor was quite clear on that – I don’t even need to call him back. Just give it to them.

No – I’m tired knowing that I can never be sure why they are acting the way they do. I can’t be sure it’s the lower medication. I’m tired thinking of them not sleeping or of his anxiety or her getting irritated at the smallest thing. I’m tired before I need to be. That’s the thing with being a parent to someone who can’t easily communicate their needs – every thing I do is a guess. Sure, sometimes, now, they tell me when they are sick and need to see a doctor. But will they be able to tell me that they feel better with more of their medication? Probably not.

It will work out of their system so slowly, they may not even feel it – until the irritation and anxiety show up. And, if it does show up, I still need to wait a few days to see if it’s just a bad day or whether the meds need to be bumped back up. I think Casey will be okay with the lower dose – and it is much easier with her. Her irritation is obvious.

With Rob – it’s hard. He loves to vocally-stim. Which is what he does – louder – when his anxiety is high. It won’t be as easy to see. I’m tired just thinking about what the next several weeks might be like. I’m trying to ignore the negative and think positive! But, I’m also a realist – I’ve been through medication changes too many times to think they are always for the best. Fingers crossed!

What I want you to remember is that you know your child better than the doctor does. Listen to his/her advice, but make sure you share your thoughts! Do some research on the medications that are mentioned – ask your pharmacist questions, too. If you aren’t comfortable with a medicine, ask what other options there are. And if your doctor won’t listen to you, find another doctor. You have long journey ahead of you – you need a doctor you can trust and who is willing to listen to your thoughts. Write down your child’s behaviors when you start the medicine and keep a journal – that is the best way to know if the medication is working. Trust me – you won’t remember as much as you think you will.

Wish us luck. Maybe send a twelve pack of Coke and some dark chocolate our way. I may need it! 🙂

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What I Wish I had Known as a New Autism Mom

What I Wish I had Known as a New Autism Mom
What I Wish I had Known as a New Autism Mom

Later this week, I’ll be taking Casey and Rob to their annual neurology appointment. I just realized that I have been making this trip – two hours from home – for 29 years. Casey was 4 when she was officially diagnosed and I was nine months pregnant with Rob. For the first two years, I had to take Casey every six months, then, when things got especially crazy for her, we went every three months for two years. By the time Rob was diagnosed, we were back to once a year.

I was thinking about the mom I was way back then. I remember being in the doctor’s office and not being too upset when he said “autism.” I had a pretty good idea before we went and, honestly, my biggest concern was to make it home without going into labor. She wasn’t sick, she wasn’t in pain. How bad could autism be? (remember – this was before everyone knew someone with autism and not much information was available anywhere!)

Casey was already in speech and a special needs preschool so there wasn’t much I could have changed. She adored Mandy and she loved her teachers. She was fearless. At that point, she just wouldn’t say much. Again – how bad could autism be?

If I could talk to that young mom from back then, I have so many things to tell her.

I would tell her that there would be days that autism would suck. That there would be days she would sit on the kitchen floor and cry from exhaustion. That sensory meltdowns would be terrible – that she would feel helpless and alone as she tried to help her beautiful little girl.

I would tell her that autism is amazing. That every day, she would find something to be happy about. That she would never take for granted a smile or a hug. That she would be happy with any words – even the ones that Casey shouldn’t say, just because she was talking! I would tell her she is stronger than she thought.

I would tell her that there are more good people than bad in this world, but that bad people are louder and meaner than she could imagine. I would tell her that standing up for her daughter would be hard and she would make people mad – but she would learn to not care. I would tell her that, even as she hated being “that mom”, people would come to respect her strength for fighting for her kids.

I would tell her that it doesn’t matter what others think. That Casey had every right to go places and try new things – and if someone didn’t like it, tough. I would tell her to not be embarrassed about autism. That she should live her life as she wanted and show Casey a world that wasn’t quite ready for her.

I would tell her she would experience lows that she wouldn’t think she could get through – but she would. I would tell her the happy times would far outweigh the bad, even when she felt the bad times would never end. I would tell her to keep dreaming for Casey, Mandy and Rob – that they would be fine.

I would tell her to ask for help when she needed it – that it’s good to be strong, but it’s okay to need help, too. I would remind her that her family was only a phone call away – she just needed to pick up the phone and ask. I would tell her that she can’t imagine the hurts that she will have to deal with – but that she would deal with them and move on…. stronger and happier than ever.

I would tell her that the struggles would be worth it. That she can handle anything. That when she worries, it’s worries that Casey and Rob don’t care about. I would tell her that Casey and Rob (and Mandy!) would struggle, but she will be able to help them. She will teach them strength and resilience and kindness and fun. She will laugh with them – she will be messy with them. Most importantly, I would tell that young mom that her kids will be okay. They will be amazing.

I would tell her that professionals aren’t always right – she will know her child better than anyone. It will be hard to stand up to them, but she can do it!

And that’s what I want all new autism parents to know. You will struggle. You will cry. You will be furious and hurt and tired and stressed. You will also be blessed to be able to be grateful for the little things in life. You will see the magic in every day, because your child will show you. It may be hard to see at times, but you will learn to see the love and you will know that through everything else, autism won’t define your child any more than the color of their hair.

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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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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.

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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!