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.

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.

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