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Causes of Autism?

Causes of Autism

I just read an interesting article about a new theory on the cause of autism.  While I never took any of the medications that are mentioned, this is something I have wondered about my kids over the years.  I’ve known for years that their senses are not like mine.

Both of them are hypersensitive to sounds.  Noises I don’t even notice can cause severe pain to them.  There were restaurants we avoided when they were little because the heating/cooling system was too loud for them and the tears would start.  I would have never figured it out.  I finally saw Rob looking at the vent with a look of fear on his face and it clicked.  Fire drill bells, sirens, timers – all are too painful for them.  When Rob was in elementary school, he had a set of hunter’s ear protection that he could put on whenever he felt the need.  Casey still plugs her left ear often.

Casey smells everything.  They both see in intricate details.  He can’t taste salt; she tastes bitter too strongly.  Textures bother Rob (he is an extremely picky-eater – I think mostly because certain textures just make him gag.) and as much as he hates to wear different types of clothes, he doesn’t notice pain until it is something that would be unbearable for us.

They “sense” people.  When we meet someone new, I watch how the kids react to that person.  If they don’t like someone, I’m sure there is a reason and I tend to avoid that person, too.  So maybe there is something to this “Intense World” theory.  Maybe they do need to pull away just to calm themselves.

But, in reality, every time I hear a new theory on the cause of autism, I wonder why it even matters.  True, if we could find the cause, perhaps it could be fixed, but autism is a spectrum disorder.  Maybe what causes it in my kids isn’t what caused it in others.  Rob developed a high fever soon after getting immunizations and had a seizure.  He lost the few words he had had before that.  Do I believe the shots did this to him?  I don’t know –  but I never let him get another one.

Casey showed signs of autism at a much younger age and she had the traditional signs – lack of awareness of people, no verbal communication (though she could sing entire songs!) and a need for things to be the same.  She had no problems with her shots.  Mandy always got sick after her immunizations, but she doesn’t have autism.

Is it genetics?  Pollution?  Allergies?  Gastrointestinal problems?  Sure, could be any of these.  Rob has a lot of stomach problems (I think this feeds his picky eating) but Casey eats everything and in mixtures that would make us sick.  I haven’t tried the gluten or casein free diets for either of them.  When I talked to their doctor about it, he told me what symptoms people with these issues often had and mine didn’t have those symptoms.

I don’t think the cause of autism is just one thing.  Maybe several have to happen for a person to develop autism.  Maybe it is what I ate when I was pregnant.  Maybe I slept the wrong way or didn’t exercise enough.  Maybe … maybe… maybe… the maybes could drive you crazy and even if you did find out why your children has autism, it wouldn’t change anything.  You would still have a child with autism that you love more than anything in the world.

We need to stop focusing on the cause and the negatives of autism and start looking at the positives.  How many people with autism are amazing artists – in visuals or music?  How many are talented in math, spelling or history?  How many can build intricate designs with any material they are given?  Your child has talents, too – sometimes it just takes time to find them.

Even if you find out what caused your child’s autism, you won’t love him/her any less.  Forget the why and focus on your child.  Help them live in a world that is too loud, too quiet, too smelly, too plain, too colorful and too yucky.  That’s your job.  To love and support the most important people in your life.  🙂

 

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Autism and the Mama Bear

An Autism Mom Defends her Children

I have always tried – really, really tried – to control my nasty temper.  I used to wonder why God gave me a bad temper – then I had kids with autism and that temper comes in handy at times to get my point across to people who just won’t listen.

One of my favorite movies is “Roadhouse” with Patrick Swayze.  In one scene, he is explaining to bouncers that they always need to be nice – until it’s time to not be nice.  And that’s what I do.  I’m as kind as anyone for as long as I can be.  And then Mama Bear comes out.

Anyone who has a child knows there are times when the child needs something that isn’t being provided to them.  Whether the school is refusing to listen or a doctor ignores your gut instinct, sometimes, you need to be demanding – and maybe loud.  It isn’t easy.

I hated being the parent that the school dreaded seeing.  But my kids were more important than anyone’s opinion.  I knew what they needed and I was determined that they would have every chance to be successful.  I learned the laws of our state and I made sure the district knew I knew them.  And that I wasn’t afraid to make phone calls if I needed to.

It wasn’t just their schools that made Mama Bear show up.  I remember one day when the kids were in their early teens.  We enjoyed going to our favorite craft store and looking around for ideas of things to make.  Casey’s obsession with socks was going strong at this point and she dropped in front of strangers all the time to jerk up their pant leg and check out their socks.  Even when it shocked people, most laughed.

As luck would have it, we got in line behind a jerk.  When Casey dropped and grabbed his leg, he freaked out.  I apologized and tried to explain about her autism.  He told me I needed to “Control that kid.  Freaks should be kept at home.”  And I saw red.  I calmly turned to Mandy, handed her the keys and told her to take Casey and Rob to the van.  As soon as they were out of hearing, I lost it on that jerk.  And I mean, full-on, out of control Mama Bear.

My exact words are lost in that red cloud of anger, but I do remember calling him a few names, telling him he was the one that needed to be locked up and then I told him exactly where he could go.  A large crowd had gathered by then, but I barely noticed them.  He just stood there – probably shocked – as I yelled.  A manager came over and the cashier explained what had happened.  When I stopped to take a  breath, she told the man he wasn’t welcome in their store and to please leave.

He mumbled something and left.  I calmly pushed my cart to the counter and paid for our items.  The cashier told me I was amazing and another mom said I did what needed done.  I said thank you and left.  I am not proud of losing my temper that day – but I doubt that man ever told another mom her child was a freak that needed to be kept at home. Or if he did, I hope he thought of me.

All of my kids have graduated, but the defending doesn’t end.  Casey and Rob can’t speak up for themselves, so I continue to do so.  Last week is a perfect example.  The details are not important, but what is important is that when I felt they were not being treated right, I went straight to the problem.  Unfortunately, the true problem isn’t one that can be resolved easily and even more unfortunately is the fact that the people who were only the messengers caught the brunt of my anger.

I did apologize to each of them and explain that I wasn’t angry with them, but the situation, despite many promises, was ongoing.  I hope they understood that I truly have nothing against them – the kids like them, so I know both are kind women.  But, Mama Bear was angry and someone was going to listen to me.

If you are like me, you will find yourself defending your kids for many years.  I doubt it will ever be your favorite thing to do, either, but if you don’t get your kids what they need, who will?  If you can’t speak up at meetings, write your thoughts down and read them.  It will help you concentrate and focus.

When I am really upset, I have a hard time truly hearing what is being said.  I have gotten into the habit of taking my best friend, Tracie, with me to meetings.  I can turn to her when I’m getting upset and she helps keep me calm.  Or she jumps in and offers the solutions we have talked about previously, but in my anger, I have forgotten.  You are allowed to take supports into any meeting.  Never forget that.

Whether it is a parent mentor who is trained to mediate meetings or it is your best friend, taking someone with you can help you during meetings.  Don’t be afraid to take notes.  Don’t be afraid to ask questions if you don’t understand.  Don’t be afraid to be a Mama or Papa Bear if you feel no one is listening to you.

I still hate being the parent that people dread seeing.  I want to treat others like I want them to treat me.  But what I really want is for people to treat my kids in the same way.  Respect and kindness go a long way.  Be nice until it’s time to not be nice.  Then let out your inner Mama and Papa Bear and get your kids what they need.

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Autism and Respite Care

Autism and Respite Care

I will be the first one to admit that asking for help is not easy for me.  I don’t like admitting that I am not a super-woman that can handle all that life tosses at me.  I don’t like admitting that I like a break from autism once in a while.  I feel like saying that means I need a break from my kids.

I know – it’s crazy.  We all need breaks from each other at times.  Typical parents need breaks just like special needs parents.  Spouses need breaks – siblings need them, too.  Being away from someone makes you appreciate them even more, right?  Absence makes the heart grow fonder and all that.

This weekend was one of my breaks.   Every few months, both kids spend the weekend at a camp about 20 miles from our house.  They also go for a week in the summer.  I’ll admit, the first time they went, I was terrified.  They had never been away except Grandma and Grandpa’s house and I was leaving them with complete strangers?  God was watching over my drive home that first night because I cried the entire way.  I just knew they would be upset and lonely all weekend and wonder why I left them.

As it turns out, I was wrong.  Very, very wrong.  They loved camp.  The counselors are all volunteers and are trained for the needs of each camper.  Casey and Rob made new friends and gained an independence that I could never teach them.  And I learned that, as important as we are to each other, we need to be apart, too.

The first time they spent a week away, I worried all week.  I enjoyed the time with Mandy and we did lots of fun things.  I have always tried to make sure she knew that she was just as special and important as her siblings and that week was wonderful for us.  Just watching TV and eating junk food was special because it was just us.  My biggest fear for Mandy has always been that she would somehow feel she wasn’t as important as Casey and Rob.  I won’t say I succeeded all the time, but I tried.

This weekend was a camp weekend.  I dropped them off at Echoing Hills  on Friday evening and picked them up early Sunday afternoon.  I thought about them the whole time they were gone, but I knew they were having fun.  They were going to the zoo with their friends and coloring eggs on Sunday.  The house was so quiet and I missed them.

But – I have finally realized it’s ok to miss them.  It’s ok to admit that I want to watch a movie without interruptions.  It’s ok to for me to want to go shopping with Mandy and not take Casey or Rob.  It’s ok for me to be me instead of “Mommy Jen” for a few nights.  It’s still hard for me to admit that – but sometimes, I get tired.  I love all of my kids more than anything, but I can’t be the best mom for them when I’m tired.

So, I enjoyed my lunch out.  I enjoyed shopping with Mandy and watching two (yes – two!) movies with Steve.  I crocheted this morning and watched TV in my PJ’s till noon.  I played on my tablet and I thought about them.  When it was time to pick them up, I was ready.

Like many parents of kids with communication problems, I’ve wondered if they love me.  I knew they did, but still, you know what I mean… that thought is always there.  After being away a few days, the kids are so happy to see me.  They are watching out the door for me to pull up and they run to me.  Casey’s eyes are twinkling as she hugs me tight.  Rob has a smile as he leans down and puts his forehead against mine.  The world is right again – Mommy Jen has come.

I ask about the zoo and Casey tells me she saw “da biggest tiger” and giggles.  Rob waits a few minutes, then says “turtle.”  I’m so glad he saw one – that’s what he really wanted to see.  We crank up the music and sing as loud as we can on the way home.

I doubt it will ever be easy for me to ask for help or admit I’m tired.   I know everyone needs it – no one can do everything alone.  When you are feeling alone, reach out, no matter how hard it is.  You are strong – asking for help won’t change that at all.  But the strong need to rest and if you wear yourself out, you won’t be the person your child needs.  Think about that.

Asking for help doesn’t mean you are weak.  It means you are smart enough and strong enough to know you aren’t perfect and you need help.  I know it can be hard, but ask for help and take the breaks you need from autism.  Taking breaks makes you stronger.  Take it from someone who has taken years to figure it out.

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Don’t Do what I Say!

Autism and Language

How is that for a conflicting title?  But, I mean it!   How many times have I wished my kids wouldn’t have done what I said?  Because, as with many people with autism, Casey and Rob take what they hear very literally.  There is no gray – if they hear it, it’s black and white.

The first time I realized this, Casey was about 5.  I was trying to fix a bottle for Rob and Mandy wanted help with her baby doll.  Casey wanted a drink – now!   She only said drink a few times, but she was pacing around my legs as I was trying to help everyone.  So I used the phrase my mom used on my brother and I – “Hold your pants on, Casey!”

And it worked!  She finally stood still so I could get Rob’s bottle and help Mandy.  When I turned to her, I was shocked to see her standing with her hands in her belt loops – holding her pants on.  Casey had no idea why her goofy mom told her to do that, but since that’s what I said, that’s what she did.  This was lesson that I’ve had a hard time learning as it seems I am constantly trying to remember to say exactly what I mean.

When Rob was 9, a new roof was being put on our house.  My only job was to watch him.  He loved tools and he loved climbing.  You guessed it – I turned my back for 2 seconds and he was gone.  I ran to the back of the house and he was gone.  I looked up to see him sitting on the edge of the roof, gigging.  Before I could think, I yelled, “Rob, get DOWN!”  Now, of course, I meant, use the ladder right beside him, but no, he got down.  He jumped from the roof, landed in the pile of old shingles and rusty nails, did a perfect somersault and took off.

I try, I really do, to say just what I mean, but it’s hard!  How many times a day do you say a phrase that everyone around you understands, but your child looks at you like you are crazy?  How about “It’s raining cats and dogs” or that someone is the “apple of your eye?”  It’s hard and our language is full of phrases like this.

Casey used to have a bad habit of dropping all of her clean clothes on a chair in her room.  I went in and told her to put her clothes away.  An hour or so later, the clothes were still on the chair, so again, I told her to put them away.  A while later, I went back in to see she hadn’t touched a thing.  So I said, “Casey, get those clothes off of that chair, right now!” How many of you know what happened?  Yes – you are right.  When I went to check on her, the clothes were off the chair and on the floor!   I don’t want to know how many times I have said this to her – and how many times the result is the same.  You would think I would learn.

So learn from my mistakes.  Always stop and think before you speak.  Make sure you say exactly what you mean.  Remember, they hear in black and white – no gray areas.  If you say it, they will believe you mean it.  Don’t generalize because that is something that is really hard for most people with autism to understand.  Say what you want/need in as few words as possible and be clear.

And when you do tell your child something and they do exactly what you say, laugh with them.  It’s not their fault that you are don’t say what you mean – or that you say it in an unclear way.  It’s just part of the autism that we all have to be more patient with.

What phrases have you used with your loved ones?

Have a Happy and Blessed Easter!

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Anxiety in Autism

Autism Anxiety

Anxiety in autism is very common.  Rob is especially prone to anxious moments while Casey doesn’t.  When he gets anxious, he gets loud.  And I mean a loud that you can’t understand unless you live with it.  I love him more than he knows, but sometimes, it takes all I have not to scream in my pillow.

Poor Rob.  I know he can’t help it.  He is really sensitive to new weather patterns and a drop in the barometer is likely to bring a lot of stress to him.  We joke that he is  better at predicting the weather than anyone who uses a computer model.  When the kids were in school, we had a small coat rack in the dining room for their backpacks.  Through the week, the backpacks hung there every night.  On the weekend, they hung in their bedrooms.

We always knew when a snowstorm was coming because Rob would put his backpack in his room instead of on the coat rack when he knew they would have a snow day the next day.  He was wrong only once in his entire school experience – and that was a flood, not a storm.  We still have people who text or message me asking what Rob says about the weather.

Summer storms are no different.  If Rob gets loud, or keeps looking at the dining room window, I know something is coming.  More than once, he has asked to shut the windows and I’ll tell him no, only to have the rain start within minutes.  I don’t know how he does it – only that he feels it coming.  Rain or snow – it doesn’t matter.

This week, his anxiety reached a higher level when our van needed work done on it.  When he gets anxious, he can repeat things.  And when I say repeat, I mean he may say the same thing 15 – 20 times a minute.  “Get the van” became his phrase and it continued.   Our conversation was repeated over and over.  “Get the van.” “It’s broke, Rob.  We’ll get it later.” “Get the van.” “Later, Rob.” “Get the van.” “Later, Rob, it’s broke.” “Get the van.” “Please, Rob, listen to me.  We’ll get it later.” “Get the van.” “No, Rob.” “Get the van.” “Uncle Jeff has it.” Silence.  Thank you, God – and please remind me to use Uncle Jeff more!

I can’t talk him out of his anxiety.  I can’t make him forget.  I know they both need their routines to make sense of a world that doesn’t make sense most of the time.  I don’t want to change the kids, but there are days when it drives me crazy.  Moms aren’t supposed to admit that, but who cares?  Everyone has days like that.

To help with his anxiety, I offer what I can.  Ripping magazines and cardboard helps Rob calm down (deep pressure on his hands) and cutting clay (again, deep pressure) so I make sure to keep supplies on hand.   He sleeps with so many blankets, it’s hard to find him at times, but the blankets offer pressure.  Rob also takes medications to help relieve his anxiety.

He will also look for things to break to give him the deep pressure he wants.  Pop can tabs are a favorite target, as are pencils to snap and paper clips to break.  It’s my job to find appropriate things to give him the deep pressure he so desperately needs.

He has been going to aquatic therapy once a week and thoroughly enjoys that.  He has a swing to relax in.  He gets the tightest hugs I can give him.  The list of what we’ve tried is long – chewy candy, gum, ankle or wrist weights to name a few.  Every day, I try to think of something else.  Luckily, everyone around us is thinking, too, and nothing is too silly to try.

Anxiety in autism is hard for our kids, but maybe even more for us.  As parents, we want nothing more than to help our children be happy and it isn’t easy to admit we are out of ideas.  Something important to remember (and I have to remind myself of this!) is that our kids are often super-sensitive to the moods of people around us.  The more anxious we are to help their anxiety, the more anxious they may become.

As hard as it is, try to relax.  Yes, your child will have hard days.  But – you need to be ready to give the hugs or the pats on the head or whatever it is that your child craves from you.  Relax and remember that the tough days always pass and easier ones come.

Smile and hug your family!

Jen

 

 

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A Proud Autism Mom

A Proud autism mom

Every parent loves to brag about their children.  You want everyone to know about the awards your child has won or how well they are doing in school.  You want to share the details of their latest accomplishment with anyone who will listen.  I’m a proud autism mom.

When you have a child with a disability, you are no less proud of your child.  Pride comes even easier when you know how hard your child has struggled with even the simplest things.  Unfortunately, not everyone understands why you are so excited because your child ate a new food.  They don’t get why it’s amazing that your little one slept through the night or actually wore a new shirt!

I get it – and so will thousands of other parents like me.  I laugh about some of the phone calls I made to my friends or parents because I was so excited that Rob wore a shirt that wasn’t striped (when he was in elementary school, every t-shirt had to be striped with no pockets.)  I remember texting Mandy when she lived in Texas just to tell her that Rob tasted a new food!

I remember being close to tears watching Casey sing in her first talent show.  She was so excited (I thought I was going to get sick from nerves!) and she did it!   Or how about the time they both told the waitress at the restaurant what they wanted – after reading the menu!  Only another special needs parent would understand my celebration – and celebrate I did!

Our milestones may not match what others do, but who cares?  They are milestones – and we made it!  All of the stress and tears were worth it  because our kids reached for the sky and touched the stars.  Who knows just how far anyone of them will go?  Think about how far your child has already come and dream away!  Never let anyone tell you not to dream.

Your dreams may be of a full night of sleep or of a child who is finally potty-trained.  You may dream of watching your favorite TV show without sound effects from the child beside you.  Maybe you dream about watching your child graduate from high school.  Go for it!

There were many days (and I’m sure that the kids’ teachers knew this) that I just wanted to give up on school.  I was tired of fighting for what they needed (and I mean for Mandy, too!) and just wanted to give up.  We made it, though – Casey and Rob both graduated with diplomas, not just certificates of completion.

Yesterday, I was lucky enough to be able to watch Casey and Rob compete in a track and field day for adults with special needs.  For the first time, Rob RAN his entire race!  I couldn’t hold back the squeals – I was so excited for him.  He was having fun and I loved seeing that.  My heart was bursting as I watched each of them win 4 ribbons of different colors.  Casey is more excited about the ribbons than Rob is, but I did catch him looking at his once with a smile on his face.

So, yes, I’m one proud mom.  What makes me proud may not be what other parents brag about, but I don’t care – and you shouldn’t, either!  Brag about every little accomplishment your child makes!  You both deserve it!  Enjoy every minute – take tons of pictures and relax!  You got this!

 

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A Birthday!

Autism Diagnosis

It’s hard for me to believe it, but in just a few days, my sweet Casey will be 29!  No, it doesn’t make me feel old at all, but it is a good time to think back to how far she has come.

When I took her for her first specialist visit, I was pretty sure we would be told she had autism, so it wasn’t much of a shock.  This was in the early 90’s and autism wasn’t very well known at the time.  My mom had read a book, shared it with me and we both knew autism was causing Casey’s problems.

The worse part of that first doctor visit was the book that the doctor recommended I read.  He said it was one of the best available (remember, this was a long time ago!) and I bought it immediately.  That was simply the scariest book I have ever read.

I read that she would probably never be potty-trained or be able to communicate in any meaningful way.  I learned that I may have more children on the spectrum and that those children would always require total care.

I wish I could find the author of that book now.  I would send him pictures of my kids as they run out to the shuttle for another day of work.  I would send him videos of Casey singing in talent shows and of Rob laughing with friends.  I would show him the amazing artwork they do and the way Rob builds with Legos.

I would show him how Casey can figure out what day of the week any date has fallen on.  People love to ask her what day they were born on – even many, many years ago.  I am sure it is a math equation – which makes me wonder how she can do that in her head, but struggles with simple math. (Actually, I know it’s  because she loves dates and hates math! )

Only those who knew Casey as a little girl realize just how far she has come.  Snow days are no longer reasons to scream the day away.  Sensory issues don’t cause as much pain, as we have learned how to help her – and she has matured enough to be able to ask for help.

So in a few days, we’ll celebrate the birth of this amazing young woman with Cookie Monster cupcakes, ice cream and presents and as I watch her blow out the candles, I’ll be thinking of the little girl who tried for years, but simply couldn’t get close enough to the candles to blow them out.  I’ll remember the tears we all shed on her 9th birthday when she was finally able to do it!

Keep us in mind on your tough days.  Your little ones will have terrible days, but with your love and support, you’ll be celebrating little joys, too!

Keep smiling and laughing!
Jen

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Welcome to Autism, Apples and Kool Aid

Autism and Siblings

Welcome to the first post on Autism, Apples and Kool Aid. I’m the mom of three amazing kids – and a wonderful son-in-law! My oldest daughter, Casey, and my son, Rob, both have moderate autism. Our autism journey started almost 28 years ago and what a wild ride it’s been!

I’m not here to tell you that autism is easy – but it isn’t the terrible disaster that so many seem to think it is, either. My hope for this blog is to share my circus in the hope that families who are on this journey with us will share our laughs and our tears – but ultimately realize all of our kids are our most precious gifts.

The name for this blog came from one day that is stuck in my memory. A day which has proved that, sometimes, autism sucks, but sometimes, it’s our reaction that causes more problems.

Rob was 13 or so at the time and we had just finished remodeling our dining room. I was in another room when I heard thump, rumble, rumble, crash, splash and Rob’s giggles. What the heck? As I ran towards the sounds, I heard it again – thump, rumble, rumble, crash, splash and giggles. I found Rob in my beautiful dining room with an apple in his hand and red Kool Aid running down my walls.

It took a second to see the plastic cups of Kool Aid lined up on the table and for the dots to connect. “Don’t throw that….” I shouted as he launched the apple across the table. It connected squarely with the next cup in line. The cup flew in the air, the Kool Aid went everywhere and Rob doubled over giggling. I just stood there and looked.

When he picked up another apple, I sprang into action and grabbed the apple from him. He laughed, hugged my legs and took off for his room. I was left standing there watching red Kool Aid run down my walls, off my curtains, down my windows and drip from the ceiling fans. I was furious! What in the world possessed him to do something like this? He had gone bowling a few days before and I guess he decided to make his own at home.

It took me forever to get the room cleaned up. All the while, I’m mumbling not so nice words under my breath. Steam was probably coming out of my ears by the time I got done. I mumbled about autism… about red Kool Aid… about sticky floors… about not being able to handle this anymore. I’ll admit, my anger took over. Now, this is funny. At the time, I was ready to explode.

Finally, the room was clean. I was sweating like crazy and still mad about the mess…. and I flipped the ceiling fan on. You guessed it – in my anger, I had forgotten to clean those blades…. and little spots of Kool Aid flew all over the room again. My temper exploded and I began to clean again.

But – after the anger passed, I realized that day taught me a valuable lesson about living with autism. Often, our reactions to what happens make problems worse. Had I stayed calm, I would have thought to clean the blades (I hope!). I wouldn’t have been so hot to flip the fan on. Had I just cleaned the room and laughed with Rob, I would have only had to do it once.

I’m not always successful, but I try – really hard – to make sure my reactions to my children’s behaviors don’t cause more problems for all of us. Sometimes, my reaction is simply to walk away until we are all calm. Walking away isn’t always bad.

So, welcome to my circus. Come back to soon and let’s learn together how to live, laugh and love with autism!

Jen