Autism Beauty

I was scrolling through Facebook a few days ago when a new post popped up by a local photographer, Dobbins Aerial Photography, who uses a drone to share new view points of things we see so often. I always enjoy his pictures and when I saw they were snow ones, I had to look. As soon as I saw this picture, it made me think of autism. Kyle graciously allowed me to use it with this blog. (If you haven’t seen his work, you definitely need to take a look!)

The picture looks so peaceful. So beautiful. It’s a piece of art created by God. Just like our kids. Are they always peaceful? Of course not, but… it still makes me think about autism when I look at it.

The railroad track is so perfectly straight. It doesn’t change course quickly – it’s always in the same place. Just like autism. I don’t know about your families, but in ours, change is not appreciated at all. As long as I keep things the way they have always been, Casey and Rob are happier.

Luckily, in the last several years, I have been able to make small changes here and there, with lots of warnings and prompts about what is going to happen. Big, unexpected changes are not liked. While Casey used to have meltdowns about these changes (snow days were miserable for all of us – she usually screamed/cried from the time she usually left until the time she should come home, then get right into her usual after school routine), she is more accepting of them now.

I give them both as much notice as I can and hope for the best. It is getting easier and I’m so thankful for that!

I look at this picture and I see silence. Like the silence so many of us hear with our kids. They may make lots of noise, but the real conversation is so rare. Sometimes, I crave that. I would love to be able to ask them something simple, like what their favorite color is, and get an answer. Casey will always answer questions, but most of the time, she answers only so you will leave her alone. She doesn’t always listen to the question.

But, again, she’s getting better at listening. And sometimes, to be sure I have her attention, I will ask her a silly question, like is she a snowman or is she purple, to get her to really listen. But, even when she’s really listening, she may not give me the right answer. I don’t think either of them see the point in casual conversation. You say what you need or want and move on to the next thing.

I see beauty in the picture. The snow, obviously, but also just softness. It’s like autism when the person is sleeping (rare, I know!). How the stress of trying to fit into a world that isn’t ready for them leaves for a few hours. How peaceful Casey and Rob both look when they are sleeping – and how much I wish for that peacefulness every day for them.

The snow hides so many things in this picture, just like autism “hides” some pieces of our kids. How many talents are hidden away because the person can’t share what they are thinking? How many dreams are never reached for because autism prevents the person from telling us what they want to do?

How many fears do we never know about? How many times do we miss emotions because the autism hides them from us? It’s sad to think about. I know I’m always trying to uncover more of Casey and Rob and sometimes, I succeed. Other times, they aren’t interested and I respect that, too. As much as I know them, there is so much more I wish I knew. Maybe someday, I will! There’s always hope!

And when I look at this picture, I see the unbroken snow, waiting for someone to walk through and leave tracks. That’s how I feel about autism sometimes. Like I’m the first one to walk this path and I’m guessing at every step what’s best for them. I wish there was a path to follow – someone else to make decisions, at times. If I’m the one breaking the path, I’ll make mistakes. It’s just exhausting, sometimes, to feel every decision and wonder what is best.

For right now, I’m going to focus on the beauty and peacefulness of the picture. Casey is sitting near me, listening to music and giggling. Rob is happily building Christmas trees with his Legos. It’s starting to snow outside. Autism isn’t always easy, but it does have a certain beauty, at times, if you only look for it.

If you enjoyed this, please check out our book, Autism, Apples and Kool-Aid, on Amazon. I think it will make you laugh and remind you to never give up.

Another Surprise with Autism

It’s funny. You would think after 36 years of living with autism, I would be used to the odd little things that make me want to cry. Or, if not cry, that just hits me in the gut. This morning was one of those.

I have been Casey and Rob’s guardian since each of them were 18. I know them. I know they can’t take care of themselves completely or make decisions that are safe. I know this.

This morning, Mandy and I went to court to have her named co-guardian of them. I’m doing my best to make things as easy for her as possible if something should happen to me and having her already their guardian made us both feel better. Since I’ve been their guardian, it wasn’t going to be a big deal.

We had the kindest judge and he made both of us feel comfortable. It was basically just us listening to him talk about their need of a guardian, how I have already been and all of the paperwork we submitted with our petition.

But, as he talked, it hit me again just how much Casey and Rob need me. Need us. Need someone – constantly. Like a kick in the gut. I know I took a deep breath and tried not to show any emotion, but it was hard. They need help. They must have a guardian. I’ve been that for 18 years.

Hearing those words again hurt, though.

It doesn’t really make sense, I know. It’s not like it was something I didn’t already know. Mandy thought maybe it was grief of the life I might have had without autism, but I don’t think so. Sometimes, it gets to me that people who don’t know how amazing they are only see the autism. The disability. Their deficits. Their needs. That’s what bothers me.

Sometimes, it is an awareness that this is my life. Sometimes, it just makes me sad that they have to struggle. Sometimes, I just don’t know why it bothers me.

Today, it did. He was a nice man, doing his job. But I wanted to tell him those papers don’t tell him anything about Casey and Rob. I wanted him to see who he was talking about. I know it’s silly – he was busy – we needed to get home – it was a court proceeding and not the right time or place.

It’s hard when you never know what little thing will kick you in the gut and remind you just how much your child/person with autism needs you. The tears come out of nowhere. Let them happen. Your tears won’t hurt anything and holding in those deep feelings will cause you more stress and anxiety. Just cry and move on.

Because it doesn’t matter what others think about your child. You know the truth. That autism doesn’t define them any more than their hair color does. Autism is just part of them. They are amazing people and I am so lucky to be blessed with so many people with autism in my life.

If you would like to read more about our lives with autism, here is the link to our book – Autism, Apples and Kool Aid. I think you will really enjoy it and I’m sure you will laugh.

Slow Down and Really Look

I needed this reminder. The last several weeks have been so crazy busy that I feel like I’m just going from one thing to another without really paying attention to what’s going on around me. Don’t get me wrong – we are having lots of fun together and have lots of adventures planned, but something happened yesterday to remind me to really look around.

Our autism support group is donating a Christmas tree to be auctioned off to benefit the Firefighter’s Toy Chest in our community. Yesterday, several families met so their kids could decorate an ornament however they wanted. It was a beautiful fall day and Casey and Rob were so excited to go to the playground for a while.

I, on the other hand, was not feeling great and really wanted to just stay home. I couldn’t disappoint them, though, and I knew we wouldn’t be gone long.

Rob and Casey had already decorated their ornaments, so they headed straight to the playground. He jumped on a swing, but after a little while, Casey came back. She sat on a bench and just watched the kids. She had the most beautiful, peaceful smile on her face and it was obvious she was enjoying yourself.

As we were cleaning up, another mom, Keisha, asked if Casey was always smiling. I laughed and said no – remembering the night before when Casey was not pleased that I wouldn’t write Christmas activities on her calendar, yet.

Keisha said that she and her husband had talked about Casey – that whenever they see her she has the most beautiful smile and always seems so happy. I stopped cleaning up and looked over at Casey – really looked at her – and saw how happy she was to be at the playground and outside. Her eyes were twinkling, her feet were bouncing and she was smiling bright enough to rival the sun.

It hit me then. I see her smile often, but sometimes, I am so busy trying to think ahead of them that I don’t really notice it. I don’t stop and appreciate how happy she gets over the smallest things. She doesn’t need much to make her happy – any trip, anywhere is enough to bring a smile to her face and twinkles in her eyes. Going to Grandma and Grandpa’s causes giggles all the way to their house.

Rob’s smiles are just as magical. He doesn’t show his excitement as much as she does, though. He tends to wait and make sure that wherever we are going is worth the trip. He is such a homebody. He enjoys activities, but only with people he feels safe with and preferably no crowds.

I wish we could all be more like them. To be happy with small things. I tend to be – a pretty flower or a text from a friend always makes me happy. But I know I need to slow down more and really look around. I need to notice the miracles around me every day, like her smile and his giggles.

Life with autism isn’t easy. It’s hard to slow down, sometimes, but I’m urging you to do just that. Sit on your porch and look at the fall leaves. Listen to some music and just sit. If we don’t slow down, we’ll miss the smiles that everyone else sees!

If you want to read more about our lives with autism, check out our new book! I hope it makes you laugh and gives you hope! Here’s the link Autism, Apples & Kool-Aid.

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.

“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.

Autism and Remember When….

Autism and Remember When

I met a mom last week who is just starting her autism journey. Our meeting was a video call and she kept apologizing as she had to interrupt our conversation and help her child. She was obviously overwhelmed and exhausted and not sure what to do first or next or after that. I remember those days and wonder how we made it through certain times.

We have been watching family movies and I see Rob in constant motion – bouncing from one thing to another, usually with ear piercing happy squeals. And if we aren’t at home or at Grandma and Grandpa’s house, someone is right with him at all times. Casey is quiet in the movies. She has a super quiet voice – almost as if she is afraid someone might hear her. And it makes me sad. For family gatherings, she is often on the outside – she was encouraged to join, but for her, being on the outskirts was “safer.” Once in a while, she ventures closer, but not often and never if it is a noisy group.

Mandy’s birthday videos are full of parties and friends – Casey and Rob had cousins at their birthdays some years. I know they didn’t care – that they really didn’t enjoy being the center of attention, but still, sometimes, it makes me sad. I know it’s just their autism, but I wonder if they wished they had friends come to the house. Somehow, I doubt it. As I’ve shared before, Mandy’s best friends included Casey and Rob in everything they wanted to join and I can never thank them enough for that. Rob and Casey often mention Kenzie and Kelsey and Ryan.

As I was listening to this mom talk, I thought about the nights when I rarely got more than an hour of sleep at a time and when I did sleep, it wasn’t a deep sleep, as I was always listening for them to be wandering the house. I remember when Rob wore jeans and regular t shirts and a ball cap every where he went. Now, I know the ball cap was a security thing for him – he was never without it. He slept in it and it went back on his head before he got out of bed each day. I remember when going into stores was painful and scary for both of them and how I never thought we would be able to take any kind of vacation.

I remember the exhaustion of the school calling every… single… day. Some times, it seemed it was for the dumbest reasons. Once, when Casey was in 1st grade, they called and told me she was “stuck” on the second floor of the school. When I asked how that was possible, I was told she wouldn’t open her eyes to walk down the stairs, so she and a teacher were sitting at the top of the steps and had been for a few hours.

I told them to get her hand and start walking and she would open her eyes, but they wouldn’t. I had to go to school and walk her down the steps. She pulled that closing her eyes crap with me, but I started walking anyway – and guess what??? She popped those eyes open! She wasn’t allowed to go to the library for several weeks because her teacher was worried she would do it again. I wanted to scream at that woman. Casey got exactly what she wanted – no math class that day.

Most days, I think it’s a miracle that Rob and Casey are doing as well as they are. There were no supports, no information (unless you counted the books that blamed autism on moms not loving their children enough 🙁 ), no internet (not that you can trust everything you read on it!) and few doctors who had ever seen a child with autism. We guessed and schemed and made up things every day that might work. At that time, it was also assumed that every person with autism was just like everyone else with autism.

So when Casey started her screaming meltdowns, I was just waiting for Rob to do the same. It was a rough few years.

But, today… Mandy and I took them to a pool and spend a long afternoon together as a family. I never took my eyes off of them (and to prove autism is still there – at one point, I asked if they needed the bathroom and both jumped out of the pool. Because they had never used the restroom there, they assumed there wasn’t a bathroom). We still had to remind Rob to not bounce and splash when people were close and had to watch that Casey didn’t try to eat all of the snacks we brought when she thought we weren’t looking (I truly believe she thinks I’m blind and dumb at times!) but – they had a wonderful time!

I could actually let Rob walk back to the pool by himself while I waited for Casey to come out of the bathroom. (I had him in sight the whole time) Not many years ago, I couldn’t have trusted that he would go back to Mandy and not help himself to other people’s snacks along the way. Or that he wouldn’t take a flying leap into the pool, regardless of whether he landed on people or not.

So this is all part of what I told the mom. That she will have hard times (what parent doesn’t?), but that she and her son will get through it. Maybe not exactly like we did, but in their own way, on their own path. I reminded her to call me when she needed a shoulder to cry on or an ear to vent into. I wish I had had another autism mom to talk to when Casey was diagnosed. I didn’t meet my “autism mom” crew until Casey was 8 and Rob was 5 – now I don’t know what I’d do without them.

Find your own crew. Whether in person, on the phone, on the internet. Lean on them and let them lean on you. Message me. I’m always looking for new friends that understand the life I lead. 🙂

Think Autism Cans Instead of Can’ts

Think Autism Cans Instead of Can’ts

Have you ever noticed how people (and I do it, too, at times) always think about what they can’t do or have instead of focusing on what they do have? And when we have children with autism that becomes an even bigger issue.

Parents compare their children to other children. My child can’t talk. My child can’t eat many things. My child can’t tie his shoes. My child can’t ride a bike. My child can’t write neatly. Can’t… can’t… can’t. And even worse, the child may hear all of this negativity – how would that make you feel if you heard every thing you can’t do listed for anyone who would listen?

Jen can’t sing. She can’t (actually, it’s more like won’t 🙂 ) cook fabulous meals. She can’t change a tire (again, more like I won’t! 🙂 ) She can’t fix the car. She is stubborn. She is impatient. She has a temper. Blah Blah Blah….

I can write all of that and not care, but if I overheard someone saying negative things about me, it would hurt. (Unless, of course, it was someone whose opinion didn’t matter to me 🙂 ) Imagine hearing things about yourself – and not being able to defend yourself or tell anyone that the words hurt. Now imagine you are a child who can’t.

And this is why we have to focus on what our kids can do and not what they can’t! And we have to be careful how we talk around them. They are always listening, even if it seems like they aren’t. (I’ve learned that the hard way – never try to plan surprises with Casey or Rob in the house – I don’t care what room they are in!)

Rob can’t tie his shoes. But he can get clothes from the dryer. He can bring the trashcan back from the street (honestly, it wasn’t too long ago that I couldn’t let him get that close to the street as he would dart away!). He can fold his clothes and he can design the most amazing things with his Legos.

Casey can’t wash her hair. But she folds laundry. She draws beautiful pictures. She sings like an angel. She can sit on the patio by herself. (again, when she was little, I didn’t dare let her out of my sight, let alone in the yard by herself!)

Besides, when you only focus on what is missing, you don’t see the positives. You drag yourself down into a hole – and take your child with you. Trust me – I know there are many days that finding something positive is as hard as finding a needle in a haystack. There will always be days like that – just don’t let yourself think only of negative. Remember that better days are always coming. (I sound like a Hallmark movie, don’t I? 🙂 )

I think every meeting about our kids should start with a list of the amazing things they can do before getting into the negative stuff. I was lucky that most of the teachers my kids had did this and it really helped me to hear that not everything was going badly. It helped me to hear that the teachers were proud of the progress, no matter how little, they had made. For every teacher reading this – please, take a few minutes and do this in IEP meetings. Help the parents remember how special their child is – they are already well aware of their child’s deficits.

Focus on every small step forward – every “can”… every time your child tries a new food – or just looks at it. When your child can put his shoes on – even if they are on the wrong feet – it’s progress! When your child can sign “yes” even if verbally, it’s still difficult. When your child calms down before a full blown meltdown. When your child can sit in a loud restaurant for a few minutes. It’s all steps forward to a future no one can predict. Celebrate every step!

Who would have thought that the child who put her head through three windows during meltdowns would be almost off her meds now? Who would have thought that the child who refused to even look at new foods is now willing to try them? Who would have thought that the child who screamed in pain at many sounds now only rarely puts her finger in her ear to block out noise? Who would have thought that the child who constantly darted away would ever walk in stores by himself?

Small steps forward and lots of “look at what they can do!” thinking. Sure, I have times that “can’ts” are in my head, but usually, I’m tired or stressed about something else and the last thing I feel like dealing with is autism. It took a long time for me to stop focusing on the can’t and start looking at the can. You can do it, too!

Because if we don’t have faith and hope for our children, who will?

Autism and Big Steps Forward

Autism and Keeping Hope Alive

I have heard from other parents that Casey and Rob aren’t like their children and they don’t believe their child will ever do the things my kids are doing. First of all – they won’t if you keep that attitude! Your child “senses” you more than you know and if you don’t think they can do something, they may feel like there is little reason to try.

There are plenty of things that I’m not sure Casey or Rob will ever do – but they don’t know that. If they want to try something, I’ll be right there trying to figure out the safest way for them to do what they want. I’m not sure driving is in their future (Casey won’t even attempt the lawn mower. Rob will… but… let’s say he doesn’t always pay attention so someone is right beside him to correct turns! 🙂 ). I don’t see living on their own right now, either, but I never dreamed we would be taking shopping trips or vacations, either, and we do that.

Earlier this week, Rob brushed his teeth on his own! I am usually telling him “brush here, brush there – you aren’t done, yet, but he did it! I never dreamed they would both handle the drastic change in routine when COVID hit, but they did. I never thought Casey would participate in her high school graduation – sitting with 200 graduates, by herself and walking to the stage and back to her chair. I never thought Rob would want to try new foods or wear new shirts. The list goes on and on of “I never thought…” but they are doing things now!

But – to some people, our successes may seem too simple. Maybe we are just lucky or I have a million dollars for therapies and support staff (don’t I wish! 🙂 ). So I thought I would share a few stories from other families who also “never thought” or were told something would “never” happen. To give more people hope that their child will always be making progress, no matter how slow! Remember, small steps are still progress!

I got a message from my friend “K” the other night that her 11 year old daughter has started using the potty! She even decided on her own!

How about “B”? He has a girlfriend and drives and is hoping to find another job when the pandemic eases up.

“T” loves hanging out with friends and will go back to his job when the crisis lets up, too.

“R” no longer has violent outbursts. His parents are able to help him calm down before he gets too upset.

How about “A”? She can finally be in the same room with her brother. For years, his noise caused her such pain that she physically attacked him. Their parents were on the verge of separating so there were two houses for the kids, when “A” learned to handle being near her brother.

What about “R”? He used to be a runner with no sense of safety. He can now walk around town by himself and has a job that he loves in a school.

I also know a few that are in college – some on their own, some with supports.

I’ve known some of these young people since they were toddlers and I’ll admit – I had thoughts about what each would be able to do as an adult. And they have proved me wrong – happily.

Please – when you have bad days with autism (and we all do – don’t buy anyone’s line that autism is always easy!) talk to someone without your child hearing. You never want your child to hear that you have any doubts about how amazing they are! Vent to someone and then go right back to loving and supporting your child.

Keep your hope alive. It isn’t easy – I’ll be the first to admit I had days when I doubted we would make it through the next day without my losing my mind. When those times happen, stop thinking about the future. Think about your next breath. Think about a glass of wine or a piece of chocolate. Think about anything that will help you calm down. Days do get better. Life does get easier.

Keep on hoping! Keep dreaming! Keep your faith!

Autism and This too Shall Pass

Autism and This Too Shall Pass

I just saw a meme that said “And this too will pass. It may pass like a kidney stone, but it will pass” and I laughed way too much at that. Cause that is life with autism at times! Casey and Rob have each had habits that I thought would drive me battier than I am at times. Those “quirks” lasted for weeks…months.. even years – till, all of a sudden, they were gone. Rob is in the middle of a quirk now that I seriously will not miss!

It started out that he just needed to say the whole phrase (it takes about three minutes to get through it all) when he was getting ready to leave in the morning. He lists fast food (he always starts with fish sandwich, McDonald’s, coca cola and progresses from there.) and restaurants. He isn’t loud when he does it. BUT – he ends with yelling “COFFEE CUP!” at the top of his lungs. KFC, Tim Horton’s (Chocolate cake yummy melt) and then coffee cup!

Yeah – it’s funny as heck. I know it is. Until – you are trying to get out of the house in the morning and he can’t put shoes or socks on while he is talking and he can’t be rushed and he won’t change and say coffee cup to end it. Or – and this has been yesterday and today – he says it all day. It hasn’t been constant – but it’s been often. And my teeth are clinching every time I hear him say “fish sandwich” until I hear the yell of coffee cup.

And then I saw the meme and I had to laugh. It’s so true. The odd little quirks that people with autism need to live with can get old quickly, but we can’t do anything but wait for them to decide not to do it anymore.

For a long time, Rob had trouble sleeping. For there to be any chance of sleep, he had to have the TV on (volume off), a night light, a fan, certain blankets and stuffed animals, a light on in the kitchen (I once changed that lightbulb at 3 in the morning!) and his CD player with a song on repeat. If anyone cares to know, I figured it out once. The song was three and a half minutes long – say four minutes with the slight break before it repeated. It played roughly 150 times every night. I tried shutting it off once he was asleep (how stupid was that?!?!). It got to the point I didn’t even hear it anymore – until one night, it wasn’t on. And he was asleep.

I thought the CD had finally died, but no. He just didn’t turn it on and he has never listened to it again. The TV is off (he refuses to let anyone turn it on at all now – God knows why!). He doesn’t care about the kitchen light or stuffed animals. He wants his nightlight and a fan. I had a hard time sleeping without the music for a few nights. 🙂

Casey insisted on doing a rather complicated set of hops, jumps and steps as she went into every door. Which isn’t a problem, really, unless a few of those steps involve jumping back out the door. She shocked many people who never dreamed she would jump back on them as they followed too closely. I learned to walk behind her so she didn’t land on some poor old person and knock them over. She couldn’t be rushed – steps couldn’t be forgotten. I don’t know when it became a quick hop in with a little kick of the other foot, but I don’t miss it. It just stopped one day.

Honestly, the only “quirk” I ever broke for them was Casey wearing gloves. She was 5 or 6 and decided that spring that since she wore gloves all winter, she wouldn’t stop. It was cute for a while. Then it was a pain in the butt, as she would lay the gloves down and not put them away. Soon, a glove came up missing. We were going to my parent’s house and she refused to leave. Mandy and Rob were already in their car seats when she hit the floor screaming and kicking because she couldn’t find her glove. I scooped her up, buckled her in her seat and listened to her scream bloody murder all the way to their house.

As soon as we got home, I searched for the darn glove so we wouldn’t have a repeat (by then it was close to June!). She never asked for it again and the next spring, she stopped wearing gloves when it got warm.

Rob’s “Long Black Train” has been around for years. It used to be his storm song, but now he has to say it – loudly – 13 times when we get in the car to come home. Once in a while, he’ll say it to sing himself to sleep. I won’t miss that when he decides he’s done with it. And I won’t miss him yelling coffee cup!

I don’t miss the impossibly strict routines we had to follow for years (we still have routines, but Casey and Rob are both more flexible about things. Unless there is a full moon, it’s windy, the weather is changing or they are hungry or tired). 🙂 I don’t miss the screams if she didn’t get a picture frame at the store. Sometimes, though, I do miss all three of them as little kids. Despite the hell of autism some days, we had fun together.

So – as you listen to whatever “song” your child needs to hear or say for the thousandth time today or drive the exact same way to school or fix foods the exact same way, just remember – this too shall pass.

Like a kidney stone.

Autism and “Kick in the Gut” Moments

Autism and Kick in the Gut Moments

It’s going to happen. As a parent, there will be times that a thought crosses your mind and you feel as if someone kicked you in the gut. The thought takes your breath away – you can’t get it out of your mind. It might be that your child is leaving for college or getting married. But, when you are an autism parent, those kick in the gut moments come out of the blue – and they hurt.

I had one of these moments yesterday and had a good cry. I don’t want to get into a lot of details (though maybe I should so people will understand their actions hurt). I was reminded again that people are scared of Rob. I get it – he’s tall and he’s big. But, he’s also a huge teddy bear and as mellow as anyone can be. I’m assuming that’s why he scares people. But – it hurts this momma to hear it.

I just want people to give him a chance. He gets anxious and it is assumed he doesn’t like someone or something. Just give him a chance to explore the new place or to get to know you. Honestly, it won’t take him long to know whether he wants to be around you. Casey and Rob both sense the “true” person that we often try to keep hidden. If Rob doesn’t like you, he will just act as if you don’t exist. He won’t attack. He won’t hurt you. Give him time to show you how awesome and amazing he truly is. Please.

Honestly, Casey is more likely to get upset than Rob. She doesn’t get upset often, but when she does, the whole neighborhood knows it. And she doesn’t care if she is at home or in a store – when she is mad, she lets everyone know. But because many of the staff at their day hab are new, they haven’t seen this side of Casey – they have only seen the sweet, beautiful smile and the young lady who loves to go anywhere and try anything. They have seen Rob anxious, though, and that’s what they remember.

Many autism parents have come to terms with the fact their child may never get married or have children. They may understand that holding a job might be difficult. They know their child may live with them forever. The thing is – even if their young person has a job and gets married, there are still mean people in the world who can hurt someone without thinking twice and the autism parent feels another kick in the gut. Their child may want a friend – or to be invited to a party – or a job – or a place to live on their own. After all, their older siblings have all of those things – why can’t they? And those questions will bring on the tears again. No matter how many times you think you are done crying, something will happen and bring on the tears.

Maybe the fact that I have a hard time letting new people around Casey and Rob is part of the problem. I just don’t trust easily – no parent with a child who can’t communicate does, in my experience. I want them to meet new people – I just want to meet these people first.

I know that I’m luckier than many autism parents. Casey and Rob are happy with their lives and don’t seem to think too much about Mandy getting married or having her own house. They don’t seem to think about not having a huge group of friends their age. They are happy with their Elmos and signs and socks and cards. They are happy that they get to spend time with Mandy and Cory, Grandma and Grandpa and Tracie and several others.

I feel for the parents who have children with autism who can communicate – who know they are different and don’t like it. It has to be devastating to try to explain to your child that other people won’t be their friend because of autism. Or that they can’t have the job they want because that employer won’t give them a chance. Or that it isn’t safe for them to live on their own.

I know there are more kick in the gut moments in our future. Every life has those moments. I just wish those moments didn’t come because someone wouldn’t give Casey or Rob a chance to show how awesome they are. That is the hardest thing for me – knowing someone only sees “autism” when they look at Casey and Rob and not the amazing individual who just happens to see the world in a different way.

Get to know them. Please.