Month: May 2017

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Autism and Violent Behavior

Autism and Violent Behavior

A few days ago, I saw a post about autism that asked people to understand that autism is not always about happy endings and smiling families.  This made me think – I never want anyone who reads my posts to think that autism is all rainbows and unicorns at our house.  We have bad days, too.

Our bad days are nothing like they used to be, though.  Casey had major behavior issues when she was little.  I’m sure most of the problems were sensory related and some were because her routine was changed without warning.  Her screams would echo through the house and her jumping up and down actually weakened floor boards.

She would grab at me and try to make me  hit her head – a huge signal that she was having a sensory meltdown, but at the time, I didn’t know how deeply effected their senses were.  All I knew was that she was screaming and would continue to scream until she was hoarse and keep going.  It was exhausting – and isolating to me.

There is no way to describe the feelings of watching your child go through that and not knowing what to do.  You can’t comfort them, as your touch may cause more pain.  You can’t talk them down because they can’t hear you or process what you are saying.  All you can do is hope they don’t hurt themselves or anyone else.  And cry.

For some families, this is an everyday occurrence.  Their loved one may become violent and attack anyone around them.  I have worked with several people like this and it is unimaginable.  Try to think about being attacked by someone you love more than anything else in the world.  You have to think about the danger your other children may be in – and the people around you, if you dare to go out in public.

I was lucky.  Casey may have grabbed at me, but only in the middle of a meltdown.  When I did get hurt, it was from struggling to help her – not anything she did to me.  Rob never had meltdowns like hers.  I prayed she would get control, but despaired that she would.  I’ll never know why the regular meltdowns stopped when she hit high school.  I suppose it was partly due to simple maturing.

I want the families who are reading this to know that just because I write about good things, it doesn’t mean I don’t know and understand your pain and your struggles.   I know what it’s like to sit on the floor and cry.  I know what it’s like to think that life will always be screams and tantrums.  I understand that you are more tired than you can explain.

I understand your fears and your worries.  I know what it’s like to wonder every time you have to go to the store if you will make it through your shopping without screams.  I know how exhausting it is to handle therapies and doctor appointments and school appointments and the usual grind of running a home.  My best advice – let some of it go.

Who cares if there is dust on the TV?  Who cares if the laundry sits in baskets?  Do only what you need to take care of yourself and your kids.   The rest will take care of itself – I promise you that.  I wish I could promise that life will get easier, but I can’t.  I don’t know why our family got lucky.

I wish I did know why.  Then I could pass that advice along to you.  I prayed a lot, I did the best I knew how to do.  My kids were (and are!) my life, but I was also selfish enough to carve a little time just for me.  It wasn’t easy at all and sometimes, it was only 5 minutes here and there, but you have to be selfish enough to take care of you.  I hate feeling selfish, but I had to be at times so we could all be happy.

There are things I will never write about.  Mandy, Casey and Rob have worked so hard to become the amazing people they are today.  I won’t write anything that may cause any of them to be embarrassed.  Some details are too private – I’m sure you can understand this.  You have those private details, too.  I have close friends and family that helped us through those times.

You need support, too.  You need to be able to talk about the devastating details that you live with.  Don’t try to keep it all in.  Find a support group, if you can, or confide in your best friend.  I have a group of “autism” moms that I know I can call anytime.  They understand my life, just as I understand theirs.

If violence is part of your life with autism, please talk to your child’s doctor.  Talk to his/her school.  Ask your county board of developmental disabilities for help.  Keep asking for help.  I know it isn’t easy to admit your child is violent, but you have to!  You need help – your child needs help.  Your child doesn’t want to act like this.

I’ve always believed that fresh eyes on a problem can bring new ideas for solutions.  You are exhausted and it’s  never easy to think straight when you are.  Let people help you and your child.  Think about the rest of your family.  You have to be strong – you have to admit your child needs help.

Maybe there won’t be any easy solutions, but you will have the support you need to care for your child.  You will have a group of people who all want the same thing – a happy, healthy life for you, your child and your family.

 

 

 

 

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Sensory Issues and Autism – Picky Eaters and the Same Clothes!

Autism and Sensory Issues

A few weeks ago, our county board of developmental disabilities held their prom.  Casey and Rob look forward to all of the dances that are held, but the prom is special – at least to Casey.

She loves the idea of dress shopping, getting her hair and make-up done and taking hundreds of pictures.  She insists on posing the same way every year (and not just for prom pictures – I have many, many years of Easter, birthday and Christmas pictures that look suspiciously alike!) and will always ask for more if I ask her if she thinks we have enough pictures.

Rob, on the other hand, enjoys going to the dances, but dislikes new clothes or posing for pictures, most of the time.  He’ll stand, but I have to be quick with the camera.  This year, there are several pictures of him dancing out of the way as the camera snapped.  I don’t try to dress him up, but I do make him put a “nice” shirt on, for a while.

Rob lives in muscle shirts and wind pants.  I have to buy super-soft t-shirts and cut the sleeves out of them.  I can’t even remember when the sleeveless part started, but I suppose I could look back at old pictures to see.  He used to wear t-shirts and jeans, but now, even the jeans are gone.

I’m sure it’s all sensory issues for him.  He does get warm easily – even in the winter, he is wearing the same shirts.  Even knowing it’s sensory, though, it’s hard to handle at times. We don’t buy him any shirts without planning to cut the sleeves.  He likes graphic t-shirts, especially ones with cars that Cory likes or other trademark items, like Coca-Cola.  I would love to see him in a pair of jeans (the last time he had jeans on was Mandy and Cory’s wedding – almost 6 years ago!) and nice shirt.

But, it’s not worth the stress to him.  Even if the shirt is super-soft, there is something that makes him uncomfortable.  With his anxiety, it’s just silly to add to that so I can see him in a shirt with sleeves.  His happiness is more important than a stupid shirt.

The sad thing is, there are people out there that judge him for what he wears.  Or they feel that I need to make him wear “normal” clothes (as I sit here at 4 in the afternoon wearing PJ pants while I write!).  I’m definitely not the mom who insists on deciding what my kids wear.  I  never was.  Don’t sweat the small stuff, you know.

And maybe that’s something as an autism parent you need to think about.  Does it really matter if your child is wearing the same blue shirt every day?  Buy several of them, wash them and let your child be happy.  Some would say I’m feeding into an obsession and that may be.  Only you can decide if your child’s need is an obsession or a sensory need.

If it is a sensory need, you need to be understanding.  Just because you would get tired of wearing the same thing, doesn’t mean your child will.  If you think it’s becoming an obsession, you will need to work on loosening the hold.  Honestly, obsessive compulsive disorder (OCD) is often part of autism.  Rob’s OCD flares when his anxiety is out of control, which feeds the obsessive drive, which feeds the anxiety and around and around we go on a not-fun autism merry-go-round.

I know many people are anti-medication, but for Rob, his anxiety meds are a life-saver.  He doesn’t know the name of the pills, but he does know he feels better with them.  When he feels calmer, we can work on other sensory issues.

He is a picky-eater.  Anything that is gooey, like Jell-O or pudding, will never touch his lips.  He loves mashed potatoes, but only without gravy.  I can proudly say that he is finally able to taste new things!  It took years and I never forced him to finish anything that he gagged on, but he still refused to try.  About 2 years ago, he started trying and I have no idea why.  Maybe his anxiety was calm enough or maybe he just matured. I’ll probably never know why.

Now, when we have a food he doesn’t usually eat, I put a small (and I mean, really teenie tiny!) piece on his plate.  While he is eating, I ask him to try a lick.  He is to the point that he doesn’t usually fight me, but tries the food.  I won’t say he likes most of what he tries, but he is trying and I’m so excited for him!  Small, baby steps are still progress, you know.

If you have a picky-eater, you will understand this, but few others do.  Have you ever had to make a special stop at a store because that is the only store that sells the certain brand of the food your child will eat?  Rob loves pretzels – but will only eat 3 brands.  And only the small midgets of 2 of those brands and the long rods of another!  We even discovered that Mandy can have the brand he loves at her house, but he won’t eat them there.  So I guess there are certain things that can only be eaten at certain places.  Another unwritten rule of autism for the Jones house!

Sensory issues are a difficult part of living with autism.  I was lucky because both of mine would leave their clothes on.  I know some kids are so sensitive that any clothes are painful for them. I feel for those parents.  I wish I knew a magic trick that would help, but unfortunately, I don’t.  Stay patient and try to laugh it off.  I used to work with a little girl who could rip her clothes off in a few seconds and a few weeks ago, I saw a picture of her dressed like a typical teenager with a huge smile on her face.  Your child may just need maturity to learn how to manage their sensory issues.

Just remember that the more stressed you get, the more upset your child will be.  Remember that they can often “read” others and you don’t want to be part of the problem.  I know there are times when nice clothes are expected, but would you rather have a nicely dressed, screaming child (who may yank everything off!) or a calm, happy child dressed in his/her favorite clothes?  I usually chose the happy child.  And if there was an event when he needed to be dressed up, I made it as short as possible.  For Mandy’s wedding, he only wore his nice shirt for pictures.  Same goes for prom.

Take a look at the picture with this post.  Rob is wearing a striped t-shirt – with sleeves!  He asked for his black t-shirt many times, but he left this one on.  He even danced a little at the prom wearing it!   He would have worn it all evening, a little stressed, yes, but he would have left it on, had he not looked in my bag and saw his trusty black t-shirt tucked in there.   What can I say?  I’m a mom – an autism mom – and moms are always prepared!  He was thrilled to have it on and we all had a great time dancing the night away.

I know you are tired of fixing the same foods (I’m sick of packing his lunch – only certain things can be in his lunchbox!) and washing the same clothes.  I am, too, and so is every other autism parent.  I’m tired of making sure that his “sets” of clothes are always washed together (he wants his black pants with his Coke shirt, etc.) and I’m tired of only seeing him in those 5 or 6 shirts.  But – I’ll never get tired of seeing him happy and relaxed and isn’t that what every parent really wants for their child?

 

 

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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.

 

 

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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.

 

 

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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.  🙂