Category: autism acceptance

Posted on

Autism and the Person Inside

Autism and the Person Inside

An autism memory popped up on my Facebook page yesterday of a day that I remember clearly.  When I got up that morning, I discovered that, during the night, Rob had gotten into the refrigerator and all of the cardboard boxes (waffles, pizza, etc) had disappeared.

The liquid soap that usually sat on the bathroom sink was gone – only the empty bottle remained and the lovely smell of coconut filled the room.   I could feel the irritation getting a better hold on me.  Why couldn’t he just sleep?  I was tired and I just needed a break.

When I went into the kitchen, I found the dish soap bottle had also been emptied and there were a few bubbles left in the bottom of the sink.  I was ready to explode and trying desperately not to get angry at Rob or to say anything that would hurt his feelings.  I knew it was all sensory issues and he couldn’t help it, but still, some days, I just didn’t care.

I went about starting my day, grumbling under my breath about autism and writing a list for the store.  I packed lunches and got Casey up (she always needs more time than Rob to get ready!).  When it was time, I went in Rob’s room and watched him sleep for a few minutes.  He looked so peaceful and I wondered again why he couldn’t just sleep through the night and stay out of stuff!

He rolled over with a smile on his face.  I said, “Hey buddy – you need to sleep during the night.”  He jumped out of bed and ran into the bathroom.  At first, I thought he was getting sick and I followed quickly.  But he was standing at the sink and grinning ear to ear as he pointed to it.  I said, “I know – the soap is gone.  I wish you wouldn’t do that.”  He kept smiling and said “clean.”  Me – “I know, Rob, I need to clean it.”  He pointed again and suddenly, I realized – he wasn’t telling me to clean – he was proud  because he had cleaned it for me!

All of the irritation was gone in an instant.  I remembered saying the night before that I needed to clean the two sinks.  So, Rob did it for me.  Maybe not in the way I would have, but he used what was available to him (cleaners are never in sight at our house) and helped his mommy.  All I could do was hug him tight and say, “Thank you, Rob.  You helped me so much!”

His grin was huge and he ran off to get ready for school.  When he went into the kitchen he looked in the sink and laughed again.  He danced off to school, happy that he could help, while I sat at the table and felt like the worse mom in the world.  My little guy was trying to help  me and instead, all I saw was the sensory issues and the autism.  I didn’t think about his need to help me.

I wondered why it seemed that I always jumped to the conclusion that autism was the reason Casey and Rob did anything.  I thought about some of their “quirks” and knew that some could very well be because they are my children and not because of the autism.  We all pass on traits to our children – hair and eye color, height, temperament – why not some “quirks” too?

I’m guilty of not trying some foods because they look funny.  Some smells make me sick and there are certain fabrics that I don’t like.  The main difference is, I don’t have a meltdown when confronted with sensory issues.  I can say, “No thanks” and move on.  Who knows what I would do if I couldn’t verbalize what was bothering me?

So I try not to blame everything on autism.  Rob was helping his very tired mom and I got irritated and blamed autism.  I was wrong.  Maybe some of the things we get so upset about aren’t autism at all.  Maybe it’s just the way they see the world – maybe partially because of the autism, but maybe because we all see the world differently.

We all need to try to remember that autism is just a part of who our kids are.  Sure, it may be a big part, but it’s still just a part, just like what they look like.  It’s hard, but please – look at the person first and the autism second.  Some days, this is nearly impossible, I know, but it’s so important.

Our kids may not be able to communicate very well, but they understand what is going on around them.  Rob knew I was stressed about getting things done, so he decided to help me.  I still feel bad that it never occurred to me that he may be helping.  I just assumed he was looking for sensory input and making more work for me.

There are days when you will just hate autism.  You will hate that your child has to deal with something that most people can’t even begin to understand.  You will be discouraged and you will cry.  But autism should never be what you see first when you look at your child.  See their bright, curious eyes.  See their smile.  See the love they have for you.

 

 

Posted on

Grandma, Grandpa and Kids with Special Needs

Grandparents and Special Needs Children

As parents, we worry all of the time about our kids.  We worry about their health, their education, their friends.  When you have a child with special needs, those worries don’t necessarily increase, but they do change.  But what if it’s your grandchildren?  The worries are doubled because you are worrying about your children and your grandchildren.

In some families, grandparents know how to “fix” the child with autism.  As scary as it sounds, the old fashioned theory is that autism can be spanked out of a child.  If the parents would just use firmer discipline or give the child a good old fashioned spanking, the autism would be gone.  There are still a few of these people around – I’ve met them.

Often, people with this attitude are older and grew up a long time before there were special education classes.  In those days, children who were different were kept home or institutionalized.  Just because I can justify why they might think discipline will “fix” a child doesn’t mean I agree with it at all.

One of my grandmas passed away before Casey was born.  My other grandparents were in their late 80’s before she came.  While both of them loved and doted on her, Grandpa and Casey had a special relationship.  Even when she couldn’t talk to him, he sat and cuddled with her or made faces at her in a mirror to make her laugh.  When we got the diagnosis of autism, he said it didn’t matter.  To be honest, I wasn’t sure Grandpa knew what a diagnosis of autism meant (like I knew, either!) but he still saw the beautiful little girl he loved, not that something was “wrong” with her.  I remember talking to Grandma one day about autism and wondering what I was going to do.  She smiled at me and said, “Jennifer, you are going to love her.”

Simple words – and so much truth!  When the bad days happen and you feel like you can’t handle autism anymore, there are only two things you need to do – take slow, deep breaths and love your child.  One small step at a time, your day will get better.  Sometimes, the blackest days are just before blue skies.

I’ve often wondered how my parents handle having special needs grandkids.  Of their 5 grandchildren, two have autism and one has cerebral palsy.  So they worry about Casey, Rob and Lacey, (and Mandy and Anna!) but I know that they worry about my brother, Jeff, and me is just as strong.  I tell them not to worry, but it doesn’t matter.  That’s what parents do, after all.

I don’t want to think about the number of times that I’ve called them and was crying so hard that I couldn’t talk.  I know how desperately worried I was when Mandy called from Texas crying – I can’t imagine living with the constant worry my parents do.  When I needed to talk to mom or dad, I would try so hard to calm down before I called, but just the sound of their voice would make me cry again.  Sometimes, you just need to hear mom and dad’s voice, you know!

Whether I called because I was angry about services or insurance or schools or just because I was so tired I couldn’t think straight, mom and dad listened until no more words would come.  They couldn’t fix anything.  All they could do was love me and let me cry.  I hate seeing my kids cry – the pain of watching your children and grandchildren must be a hundred times worse.

My parents are also great at making me stop and consider just how bad things really are.  Many times, after talking to them, I am calm enough to realize that the “most terrible day ever” will be funny in a few days… or weeks… or maybe never, but the day will end.  Their faith is strong enough for all of us.

Of course, some of my “emergencies” made them laugh – after making sure we were all ok.  I remember one call I made – poor dad happened to answer the phone.  When the kids were little, I enjoyed entering baked goods in our county fair and had just made the most beautiful peach pie you can imagine.  I was so excited – I knew I had a real chance at a ribbon.  I sat the pie on the cooling rack and went to the bathroom – and Casey cut the pie!   I was so mad (she didn’t even like peach pie!) and then so upset because I couldn’t make another one.  So I did what I always do – call mom and dad.  I’m sure Dad thought someone had died because I was crying so hard.  When he heard that all I wanted was a can of peaches, I’m sure he wanted to reach through the phone and smack me for scaring them, but instead, he did what my parents always do – he brought me what I needed.

I know that my kids have come as far as they have because, even when I wanted to give up, my parents wouldn’t let me.  They gave me strength when I didn’t have any – and a kick in the butt, if I needed that.  I wish all kids had grandparents who did this, but I know it isn’t always possible.  If your kids have grandparents that can’t love them unconditionally, it’s up to you to protect your kids from their negativity.  It won’t be easy, but your parents don’t need your protection – your kids do.  Life is hard enough without feeling as though they aren’t good enough for their grandparents.

As parents, we may have had to change the dreams we had for our special needs kids, but we still dream for them. Maybe some grandparents need time to change their dreams, too.  My dreams are simpler now – even for Mandy.  I dream for them a life that makes them happy, a circle of support that love them as much as I do and a faith strong enough to withstand the crap that the world tosses at us at times.

 

 

Posted on

Autism and Siblings

Autism and Siblings

Autism and siblings can make for difficult family moments. When I wrote last week about turning into a “Mama Bear” I didn’t mention that, in our family, there is also a “Sister Bear.”  Sister Bear can be even more protective of Casey and Rob than me!  This fierce protectiveness helps relieve the Mom Guilt I’ve often felt because I always worried Mandy would somehow feel she wasn’t just as important and special as the other kids.

I had read so many stories of siblings of people with special needs who resented their family because the special needs child seemed to “get everything” and they felt left out.  I was determined Mandy would never feel that way, but I’m sure she did.  After all, even in “typical” families, siblings feel left out at times.

I’m not sure how old Mandy was when she realized that Casey and Rob were not like everyone else’s siblings – or if she even cared when she did.  She has always accepted and loved them as they are.  If anything, she expected them to be more what she wanted and could find ways to engage Casey in play, if only for a few minutes.  Rob was usually willing to do whatever Mandy wanted – and still is!

Our school district has 4 elementary schools and special needs students are in 2 of them.  This meant that Casey and Rob went to one school while Mandy went to another.  While I wasn’t crazy about the idea at first, I think it helped Mandy by letting her be herself and not just the sister with “odd” siblings.  She was a freshman in high school before she was in the same school as Casey.

To be honest, I didn’t think much about them being in different schools at the time, but now, I think it was a great thing for Mandy.  She needed a break from autism, even if she was too little to understand what that meant.  We all need that break, especially siblings.

Think of how difficult it is for you to hear something negative about your child with autism.  Can you imagine how hard it is for a sibling?   Especially if that sibling is young and hasn’t learned the hard truth that people aren’t always nice to others.  Mandy’s closest friends knew about Casey and Rob, but they accepted them and my kids joined in their play often.

There were difficult times for Mandy.  Items that were special to her were destroyed and couldn’t be replaced.  She was rightfully angry and I felt terrible that she was hurting because of autism.  I tried to help her understand that Casey and Rob didn’t mean to hurt her, but how could I help her when I felt the same frustrations at times?

I felt guilty when she wanted me to play with her horses or her Barbies and I had to sit at the top of the stairs so I could hear what Casey and Rob might be doing.  I felt like she only had half my attention when she deserved it all.  There is no stronger “Mom guilt” than feeling as if you can’t give your child your full attention.

When Mandy had special events, I made sure to make arrangements for Casey and Rob so I could be at them without being distracted.  It’s impossible for parents to be at every event for their child, but it is so important that you try – and that when you are there, that child has your full attention.  Remember – you have to celebrate every child’s achievements!  It’s easy to get so wrapped up in autism that a “typical” child’s accomplishments don’t seem that special.  Never let that happen!

Make time for special days with each of your typical children.  Every child needs one on one time with you.  You may need to be creative to find that time, but it can be done.  Once in a while, I sent Casey and Rob to school and took Mandy shopping and out for lunch.  Or I might let Mandy stay up late and we watched a movie after the kids went to sleep.  It didn’t matter what we did – only that it was just the two of us and she had my full attention.

I can’t imagine how hard it is for kids to have siblings with autism.  It seems they grow up much faster than their peers.  I can’t count the number of times Mandy took Rob to her room while I tried to calm Casey down.  Or the number of times Mandy gave me a hug as I cried because I was just so tired.  Or how I often I had to say to her we couldn’t do something because the other kids wouldn’t like it.  She seemed to take it all in stride, even as I was wondering if she would start acting out to get attention, too.

She defended (and continues to do so) Casey and Rob against anyone she felt was being unfair to them.  In high school, she overheard a boy call Casey a name and she went off on him.  She could barely tell me about it through her tears later.  I had a hard time comforting her when I wanted to find that kid and smack him, but she eventually calmed down.  She just couldn’t understand why anyone would be so mean because someone was different than them.  She still doesn’t.

Siblings of people with autism are often the most compassionate, strong, kind people you will ever meet.  They have lived a life most people cannot and will not ever understand.  They laugh at the silly fights other siblings have and they are typically very close.  They grow up knowing that it’s useless to get upset over little things and have a fierce independence.

You will make mistakes – we all do.  Forgive yourself and move on.  You will be too tired to play with your kids.  You will have to say no to some things.  You will have days that you feel like you are failing all of your kids.  But – those days are few and a new day always comes.  Do what you can, whether it’s spending a day with your child or cuddling on the couch.

I pray the same prayer other parents of children with autism pray – that Mandy has always known she is as awesome as Casey and Rob and that I love them all to the moon and back.

 

 

Posted on

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.

Posted on

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.

Posted on

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