Author: jsjones116@yahoo.com

Jen is the mom of three amazing adults. Her oldest daughter and her son both have moderate autism. She is a freelance writer who is passionate about spreading awareness and hope to families with special needs.
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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.

 

 

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Autism and New Experiences

Autism and New Experiences

As many of you know, trying new things is not a favorite activity for people with autism.  Whether it’s a new food, new clothes or a new way to drive to school, new experiences are often stressful and can bring on sensory meltdowns – if you can even get your child to try!

When Rob was little, he wasn’t a picky eater.  There were things he didn’t like, but for the most part, he would try anything to eat.  Now, it’s hard to remember when that changed, but I know when he was in elementary school, he decided he would only wear striped t-shirts with no pockets.  It didn’t matter what  brand, but I soon bought all of them at Walmart because he decided to chew the front of every shirt.

Even though I had been living with autism for 10 years by then, it still never occurred to me that chewing on his shirts was a sensory thing.  He squeezed his jaw when he was anxious, so obviously he needed that deep pressure to calm himself.  It was natural for him to look for something to give him what he needed and chewing his shirts gave him that pressure.  It cost me a fortune to keep him in shirts and I finally gave up – he could go to school in chewed shirts.

Casey never chewed her clothes, nor did she care what she wore.  She would eat anything (even some combinations of food that would make the strongest stomach turn) and still does try anything.  However, she is afraid of water and heights.  The scary part is, even when she is scared, she will often still go in the water.  When she is scared, she squeals “Help” in a high pitched voice.

Rob finally pays attention to his fears.  He never had a fear of water.  He went into lakes or jumped off boats with no thought. (I caught him by the life jacket on more than one occasion)  We had a pool and he swam like a fish.  Unfortunately, a few years ago, he jumped into a pool with a friend who is several inches taller.  He couldn’t touch, got scared and water was no longer something he enjoyed.

He still loves watching water flow – he could sit for hours and watch a creek or waterfall.  You can see the anxiety drain out of him as he sits.  He enjoys hot tubs and, again, his anxiety levels drop.  Casey will slowly go into water where she can see the bottom, but no rivers or ponds for her.

Yesterday, we tried something new as a family and I’m so excited to say it was a huge success!  Mandy and Cory bought kayaks last year and Cory’s family has a campsite by the river that they have given us access to (It takes a village to raise a child – thank you so much to extended family!).  I thought Casey would probably go by the water and maybe sit on an inner tube, but I doubted Rob would.

Casey doesn’t care if her clothes get wet, but Rob does.  Your clothes are simply not supposed to get wet and he refuses to wear swimming trunks.  When he goes for aquatic therapy, he has a “special” t-shirt and shorts to wear so I decided that’s what he would wear yesterday.  He wasn’t happy about wearing shorts instead of pants, but he did it!  Score one for mom!

My dad had life jackets for both of them and, again, I doubted Rob would wear one.  I was wrong again.  He had no problem with putting it on and couldn’t wait to get to the kayak.  One of the kayaks is for 2 people and Mandy was going to take each of them.  Rob was careful not to get his shoes wet as he stepped onto the kayak and he wanted a paddle like hers.  He never figured out how to paddle correctly, but he tried.

Casey decided to wade in the river while she waited her turn.  Of course, as soon as she stepped in, she slipped and squealed “help” but she stood up and kept going.  I was so proud of her!  She slowly made her way to the middle of the river (where we were the water is only waist high at the deepest point – we didn’t let her go far and never without her life jacket on)

We brought another kayak and a tube down to the river.  We attached ropes to each and Rob climbed into the boat all by himself.  Casey hopped on the tube and for the next hour or so, Mandy and I held the ropes and let them float away and then pulled them back to us to float away again.  I wish we could have had cameras with us to capture the complete relaxation and small smiles on Rob’s face and the huge grins on Casey’s.  I am surprised that I’m even able to move my arms today but I couldn’t stop.  It was just too amazing to experience something new with them and to know they both enjoyed it!

Living with autism is hard on the whole family.  Too many times, there is something you want to try, but it just isn’t possible with the child with autism.  Then, if you do go, you feel terrible guilt because you didn’t include that child.  Many years ago, I finally realized that Casey and Rob don’t look at it as being left out.  They know how much I love them and would much prefer to stay with Grandma and Grandpa or Tracie instead of being taken somewhere that may cause stress.

Casey is able to go anywhere now.  She has made it through experiences that even a few years ago, she couldn’t have done.  She will go to movies, to shows (we’ve seen Elmo Live 3 times!) and anywhere to eat.  I don’t know why she can, but my guess is that she matured enough to try something and realized different things could be fun.  Now, she wants to go everywhere.

Rob is my homebody.  He is able to tolerate crowds for short periods of time, but is still picky about where he goes.  But – this is finally changing, slowly but surely.  His ability to get into the kayak yesterday without thinking twice is the perfect example of that.  At their day-hab, he is showing interest in activities that are outside those 4 safe walls and is even volunteering at a few places.

Again, I don’t know what changed.  He is still unpredictable about what he’ll try, but while he still hates new clothes, he is willing to wear them for short periods of time.  He will nibble at a new food.  He will go places, but I make sure it is for short periods of time until I know he’ll enjoy it.  Maybe he is maturing, too.

Never give up on trying things with your child.  Temple Grandin, a woman with autism, has said that we shouldn’t let our children stay in their worlds – that we need to help them join ours.  It’s not easy and it’s a slow process.  A turtle’s pace slow and sometimes, it’s one baby step forward and two big steps back.  I know you are discouraged and tired.

I know that taking your child out is scary and it’s exhausting. Bring all the supports you may need – snacks, fidgets, favorite books, iPads – and plan a short visit.  Only you can choose the best place to visit as you know your child better than anyone else.  Try to relax – your anxiety will feed theirs.  When your child starts to get anxious, pack up and go.  Make sure to tell your child how happy you are and how proud of them you feel.  You may not get a reaction, but they are listening – never doubt that.

Enjoy every baby step your child takes.  Cheer for them (and yourself – you deserve it, too!) and don’t worry about the next step.  Just like “typical” kids, your child will make his/her next step when they are ready and you can’t force it.

Never give up!  I completely understand that feeling and there were many time I felt like that, too.  When you do, just breathe.  Don’t think about the next month, the next day or even the next minute.   Just breathe, slowly and deeply.  You will get through it!

As for us, our next adventure will be taking a short kayak/tube trip down the river!   I’m not sure who is more excited – Casey, Rob, Mandy or me!

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Autism and that Helpless Feeling

Autism Anxiety

A few weeks ago, I wrote about Rob’s anxiety level and how even small things can make that level soar.  This week, I decided it was time to sell our van – it’s been ours for 13 years and Rob is having such a hard time with it.

At first, he took the For Sale sign off of it.  I wasn’t sure if he knew what the sign meant or was only protecting Grandpa Mack’s sign (he brought it home for me).  He likes our new car so I had hopes that maybe… just maybe…  he would adjust.  As long as the van was here, he was ok.  I took it to my parent’s house yesterday and last night was rough.

He asked about the van as he stepped off the shuttle.  He asked as he walked in the door.  He asked as he took his pills.  He asked as he ate his snack.  “Get da van?  Get da van?”  I told him it was at Grandpa’s house and that calmed him for about 2 minutes.  I tried to explain I was selling it, but trying to explain that concept without using too many words is nearly impossible.  Rob has a hard time processing words, so the fewer you use, the better.

Rob was ok for a while, then his “weather man” yells started and soon, it was storming.  Casey wasn’t yelling, but she wasn’t in a much happier mood.  She doesn’t care about the van, but she does care about ” funder (thunder!)noisy, hurts ears.”  I gave her a heavy blanket and gave him a pile of magazines and hoped for the best.

He came out of his room every 5-6 minutes and asked for the van.  I tried different words – it’s gone, we have a new car, it’s at grandpa’s house – but he couldn’t let it go.  I felt so helpless that I couldn’t help either of the kids with their stress.  Thankfully, the thunder storm passed quickly, so at least Casey felt better.

Rob seemed a little better at supper.  He didn’t mention getting the van at all, but soon after, he started again.  I don’t want to guess how many times he said “Get da van” during the evening.  I’m sure a few hundred, at least.  I tried distracting him, I tried ignoring him, I tried more magazines.  Nothing worked.

By bedtime, I had little doubt that it was going to be a long night.  He was tired and yawning, but couldn’t let the thought of the van go.  I was exhausted and falling asleep watching TV hoping that he would sleep soon so I could go to bed, too.  He lay in bed and talked and made his noises and every time I reminded him to use a quiet voice because Casey was sleeping, he asked for the van.

I don’t know what time he finally went to sleep, but it was way after midnight, I’m sure.  I simply couldn’t stay awake any longer and he had gotten quieter.  The first thing he said to me this morning?  “Get da van.”  He just can’t handle the change in his life.

Most of the time, changes cause him anxiety, but he gets over it quickly.  People with autism often have a terrible time when their routine changes, especially if it was unexpected.  Some will scream and have meltdowns, as Casey used to do when she had a snow day from school, while others will just become seriously stressed with no idea how to handle it.

As parents, we want to be able to help our kids through everything, whether that’s a change in their routine or a move across the country.  When I can’t help my kids, I feel so helpless. I know he needs something, but, unless I bring the van back, I don’t know what I can do except hope that he lets it go soon.

Last summer, my mom and I took the kids to Virginia for a few days.  Rob literally asked for Hopewell (the sheltered workshop they attend) the entire trip.  He repeatedly asked for “Tomorrow’s Hopewell?”  I hadn’t even thought about his anxiety about that, as I knew he would enjoy the hiking, swimming and the hot tub at the hotel.  Worrying about going to Hopewell never crossed my mind.

I felt so bad for him.  I had assumed that since he was with us, he wouldn’t worry so much about the change in his routine.  I was so wrong – and I was mad at myself for once again letting my son down.  I knew changes could bother both of them, but he’s a momma’s boy and I just thought he would be ok as long as he was with me.

Autism has taught me to expect the unexpected, but I still forget at times.  I knew Rob would have a hard time with the van being gone, but I hoped that he would like the new car so much, he would be ok.  So now I have to find new ways to help him understood this major change in his life.  It’s so easy to forget that the decisions we make every day can adversely effect the ones we love the most.

Some times, I get so tired of trying to think about every single way my choices can mess with my kids’ autism.  Their sensory issues can mess with the simplest things in life – what he will eat and wear, how long she can be in a store.  I know it’s impossible to think about every little detail, but I try – and then I get mad at myself for missing some thing that causes anxiety.

My advice to each of you is simple.  You will never be a perfect parent – to your child with autism or your typical child.  Your kids don’t need perfection.  They only need you and to know that, no matter what, you got their backs.  Let go of the helpless feeling and the “mom/dad” guilt.  It’s not easy, trust me, cause I have to remind myself almost every day, but life is too short.  Just let it go.

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Self – Stim… It’s not just for People with Autism!

Self - Stim and Autism

Many years ago, I attended an Autism Society of America conference in Chicago.  If you have been to many conferences, or any type of long meeting, you know that by the end of the day (or in this case, end of the second day!) you are just putting in time till you can leave.  You are tired of sitting and in my case, new friends were going to take me to Navy Pier as soon as the day was over.

The last speaker of the day was Dr. Jim Ball.  I’ll be honest, even though he was a behavior specialist and I knew I needed the information, my main thought was wondering how long I needed to stay in order to get my full day certificate.  Let me just say this – an hour and a half later, I couldn’t believe his time was up and I had to leave!

When Dr. Ball stepped up on the stage, his first words were something like “Every one in this room has a stimming problem.”  The whole place (about 300 people) looked at each other like “Oh man – this guy isn’t gonna be worth listening to.”  Then Dr Ball asked, “How many of you, right now, are tapping your pencils?  Twirling your hair? (ME!) Swinging your foot? (also me!)  Those are all stimming behaviors – only socially acceptable ones.”

He had my attention and everyone else’s in the room.  I had never thought about what I did to control myself in public or when I’m bored.  When my hair was longer, I twirled it around my fingers as I concentrated.  I swing my foot all the time.  I rock back in forth (though I think this one may be learned from watching Casey!)  I play with my phone.  I twist my fingers together.

Who else taps their shopping cart while they wait in line?  Anyone else fold their legs or feet under them while they sit?  Some people crack their knuckles.  Others tap their toes.  Still others swirl their drinks in their cups.  And I know many of you stare at your phones.

So why in the world is it ok for us “normal” people to self-stim and it isn’t for people with autism?  I know people who chew gum all the time (deep pressure on the jaw!) but if you see someone with autism with a chew toy, it is inappropriate.  The reason is simple – we have learned what it socially acceptable and people with autism have not.  Or they have and they don’t care.

When Casey has to wait for anything, she sways back and forth, gently.  She doesn’t bump into people and isn’t very obvious about it, but she needs that comfort.  People often stare at her so many times, I join in.  Let them look – my daughter and I are having a quiet moment together and I don’t care what they think.

Rob is a little more obvious about his rocking.  He is a lot taller than her so that gets attention, anyway, but he also hums while he rocks.  And his rocking isn’t a smooth back and forth – he jerks around at times.  But again, he isn’t hurting anyone and I can stare right back at anyone who dares to stare at him.

I’ve heard people say that we need to teach people with autism to be more socially acceptable in their stimming.  I want to know why.  Personally, sitting near a woman who is clicking her nails together to stim drives me up the wall, yet, that is acceptable and rocking isn’t.  Who decides what is ok and what isn’t?

As a parent, we want our kids to be accepted by everyone, but the reality is, even if your child was typical, there will be people who do not accept him/her.  I know there are people who, for reasons I don’t even know, I don’t like.  And I’m sure there are people who don’t like me.  So why do we fight so hard for our kiddos to give up a stim that they need?

Your child doesn’t need everyone to like him/her.  They need your love and your acceptance.  There are some stimming behaviors that should be curbed when they are in public, but you can teach them that that behavior is a “home” stim.  No, it isn’t easy, but neither is teaching a child to use a potty and we do it.  Be consistent and be kind.  Your child can learn!

After listening to Dr. Ball that afternoon almost 20 years ago, my thoughts on self-stimming behavior have changed drastically.  I don’t try to stop the kids, but redirect if needed.  Most of the time, I’ve been lucky that their stims have been odd looking, but not inappropriate.

Flapping hands and twirling around seem to be big stims for many people on the spectrum.  It may be hard to watch others look at your child, but your child probably isn’t paying any attention to them anyway.  The stares are hurting you, not them. Stare right back.  Glare if you want.  Remember, people stare at typical kids, too.  It’s just part of being a rude person and you can’t change it.

I heard some parents complaining last week about a child at the table next to theirs.  The little one obviously had a disability (not sure autism, but probably) and was staring at an iPad while waiting for his food.  He wasn’t moving around, he wasn’t making a sound.  This couple was making loud comments about parents who can’t even take their kids out in public without giving the child something to entertain themselves.

Their comments went on to say that they never had to take electronics for their kids – they were taught to sit and wait. And blah blah – you know the drill.  Meanwhile, as they are complaining about this boy and his iPad, they are both staring at their phones.  What the heck is the difference?  Besides the little boy wasn’t bothering anyone and their comments were mean and hurtful to the family?  If you can sit at the table with your phone, then someone else can use an iPad.  Pretty simple to me.

I bet even as you read this, you are stimming.  Think about it.  Are you playing with your hair?  Rubbing your leg?  Tapping your foot?  It is ok to self-stim.  We just need to help our kids find a stim that helps them – and often, they find it themselves.  I never taught Casey or Rob – they just do what they need to do to feel comfortable in an insane world.

Self stimulation can occur for many reasons.  We can do it to “wake” up or to calm our bodies.  It may provide some sort of internal pleasure.  Casey and Rob often use stimming to calm themselves when they are becoming overwhelmed.  The faster Rob rocks, the more overwhelmed he is getting and I know I need to remove him from the situation or provide deep pressure to help calm his body.

You may consider talking to a behavior specialist if your child’s stimming seems to be out of control.  I have listened to Dr. Ball several times and I am still learning from him.  His presentations are never boring!  Your school district can contact a behavior specialist (districts often have behavior specialists contracted for services throughout the school year) if you feel the need.  Your doctor may also be able to recommend one.

In the picture about, Rob is not imitating the boy from Home Alone.  Squeezing his jaws have been a favorite stim of his since he was a toddler.  The tighter he squeezed, the more he needed to calm down.  He wasn’t always upset – sometimes he just got too excited and needed to calm down, like in this picture.  Coloring eggs as always been a favorite activity of his.

Remember, don’t try to stop the stimming without replacing it with something else.  I can almost bet that your child will find another stim – and it may not be something you want to deal with!

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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.  🙂

 

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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.