Tag: sensory issues

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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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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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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?