Category: autism and sensory issues

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Autism and Halloween – Fun or Too Much Stress?

Autism and Halloween

Halloween is almost here again and Casey has asked several times about trick or treating.  The funny thing is she always answer herself with “Trick or treating is for little kids.”  I know lots of parents of adults with special needs take their kids trick or treating and I think that’s great. For me, autism and Halloween have never been much fun.

I think there was one year that Rob wanted to wear a costume.  He always wore one because his sisters did, but he truly couldn’t have cared less.  Trick or treating wasn’t fun for him – again, he did it because Casey and Mandy did, but he didn’t like being in crowds of people, especially when they were in costumes.  He didn’t like talking to people – “Trick or treat” or “Thank you.”  He didn’t care about the candy.

Casey liked dressing up, but she rarely said what she wanted to be.  She wanted the candy that came from trick or treating.  She didn’t care if she appeared rude as she grabbed candy.  Taking the three kids trick or treating was so stressful for me.  If given the option, I would stay home and pass out candy.

In the last few years, Casey has chosen what she wanted to be.  One year, she was a mermaid – another a unicorn.  This year, she wanted to be Dorothy from the Wizard of Oz.  This completely shocked me because that movie was never her favorite.  Mandy and Rob were obsessed with it – Rob still is.

Mandy and I decided if she wanted to be Dorothy, we would all be Wizard of Oz characters and go to the County Board of DD dance together.   Casey and Rob love the dances and I’m so thankful our county holds dances several times a year.

We really weren’t sure Rob would get into the whole costume thing.  I talked to him about it and asked who he wanted to be.  He wouldn’t answer, so Mandy decided to be the Cowardly Lion and I would be the Scarecrow.  Rob loves wearing hats, so we thought we would get a funnel for him and be happy with that.

My dad actually made a neat funnel hat for Rob and he was thrilled with it.  He couldn’t stop giggling when he saw it and tried to wear it over his headphones.  We talked about the dance for a week or so and I kept telling him he could be the Tin Man.  He just laughed.

The night of the dance, I hoped he would wear a gray shirt, but knew the chances weren’t great.  I cut out a heart for him and made an axe.  When he saw us getting ready, he jumped up and put his shoes on.  I asked him to please wear a gray shirt – and he immediately pulled off the red shirt he was wearing.  I put his t-shirt on inside out to cover the logo a little – and he left it that way!

He even asked to paint his face!  (Mandy had painted a lion face on herself and given Casey a little make up)  I never dreamed he would sit long enough, but he let me paint his face and asked for his arms to be gray, too.  I told him we’d better not paint his arms and he was ok.  He grabbed his axe and put his hat on and was ready to go.  (A word of caution – paint and beards do not go well together.  I never thought about that.  His beard was like a brillo pad and he was not a happy guy as we tried to get the paint out later!)

We posed for pictures and headed to the dance.  We got several compliments about our outfits and Casey took off dancing after tossing her basket and Toto at Mandy.  Rob climbed to the top of the bleachers in his usual place.  Casey danced her figure 8’s around the floor and he watched the flashing spinning lights.

Soon, he got up and actually danced with me!  He asked for “The Twist” but he was willing to dance to other music.  He has his own style of dancing, but I was so excited to see him willing to try something new!  Casey even slowed her dancing ( I use that term loosely – she tends to gallop back and forth and jump up and down) to dance with Mandy.   We had so much fun dancing together – and his hat stayed right on his head.  He was so proud of it.

I know how hard holidays can be for your little ones with autism.  I don’t miss the stress of trick or treating at all.  I don’t miss Halloween parties that I didn’t enjoy because Casey and Rob didn’t.  I don’t miss struggling to find ways for them to enjoy Halloween, too.  But, I have learned that just because something has “always been done this way” means it can’t be done differently.

We make our own traditions – ones that we can all enjoy together.  I remember the first year that all three kids carved their own pumpkins and how proud Casey and Rob were. (For the next several years, their pumpkins always looked exactly the same.)  Last year was the first time Casey didn’t ask to carve a pumpkin.  She hasn’t mentioned it yet this year.  I can’t decide whether to be happy to avoid the mess or sad that she is growing up.

There is more awareness of autism now than when my kids were little.  Hopefully, you won’t meet as many people who make nasty comments about your child’s lack of communication or the fact they aren’t wearing a “real” costume or are trying to grab too many pieces of candy.  If you do meet any, educate them, if possible.  Ignore them otherwise.  Some people will never be aware of the needs of others.  Don’t let them ruin your fun.

Dress your little one in whatever they can handle.  If it’s not a “real” costume, who cares?  Your goal is to help them have a night of fun – not to worry about the ignorance of others.  If your child is non-verbal, print a card that says “Trick or treat” on one side and “Thank you” on the other.  You can easily help them flash the words to people.

If your child only wants to go to one house, visit one and go home.  No one needs that much candy, anyway, and you’ll hopefully prevent a meltdown from sensory overload.  You may have to adjust your expectations to fit your child and that’s ok.  You can’t force your child to enjoy something and the possibility of a meltdown just isn’t worth it.

Adapt your plans as you need to.  Do what your child needs to do.  Ignore the people who have opinions on how they would handle Halloween – they are not experts on your child like you are.  I hope that your Halloween is a fun and happy time for you and your family.  I’m still so excited that Rob joined in this year and am hoping you have a wonderful time, too!

 

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Autism, Sensory Issues and Fun

Autism, Sensory Issues and Fun

In our house, the last weekend of September/first weekend of October is a time to be thought of all year.  That’s the week that the fair comes to town with all of the spinning, dropping, swooping rides that Casey and Rob just adore.  Their autism sensory issues enjoy the most amazing times on those rides.

Rob loves anything that will swing him.  His absolute favorite is a giant boat that swings back and forth.  While most people want the end seats so they go higher, Rob doesn’t care.  If the end is open, he’ll sit there, but he’ll take any seat, as long as he gets to swing.  He was on this ride at least eight times this morning.

Another favorite is one that swings side to side.  He giggles as soon as he sees it and smiles through the whole ride, even when it goes high.  It always amazes me that he is scared of heights (won’t even think about riding the Ferris Wheel) but he’ll happily jump on rides that go just as high.

He refuses to go on anything too high.  Or anything that will go upside down.  He likes to go in circles.  Casey will ride anything, at least once.  She has to ride the Ferris Wheel, even though she is terrified of heights because she has rode it every year.  It’s routine and you can’t break routine!

We plan to get to the fair early on Sunday mornings, because there is never a crowd.  The kids can run from ride to ride without stopping.  By the time the crowds come, they are ready for French fries and to head home.  Rob doesn’t like crowds at all and after a few hours, both of them begin “shutting down” because they are over-whelmed.  What was a dream time turns into a difficult situation for them.

The swinging calms Rob down.  I’ve often told our neighbor I was going to buy a huge boat swing for our backyard.  She was completely agreeable, as long as she could ride it, too.  While I am joking about the giant boat, I desperately wish I could find something else that makes him so calm and happy.  He loves his swing, but it can’t swing him as far and as high as he wants.

Many families I’ve talked to don’t go to the fair.  The noises, the lights, the spinning, the people – it’s just too much for many people with autism sensory issues.  I understand that completely.  While the kids enjoyed the fair when they were younger, it wasn’t nearly as much as now.  Today, they can tell me what they want to ride.  They can tell me when they have had enough.  (usually by asking for fries – that’s always been the last thing we do and as you know, you can never break the routine!)

Casey and Rob rode constantly for a few hours.  I don’t think Rob was completely ready to stop, but when Casey asked for fries for the third time, we knew it was time to go.  I can always tell by the look in their eyes when they are becoming overwhelmed and shutting down.  The happy, sparkles that they start the day with are gone and dull eyes are looking out.  They both withdraw when they are overwhelmed.

When Casey was little, she didn’t give me any warning that she was overwhelmed until the meltdown happened.  She wasn’t able to say she had had enough.  Thankfully, she can now.  Hopefully, your little ones will grow into that skill, too.  Rob never had those meltdowns.  He would just withdraw into himself until he felt better.

I’ve always been willing to leave when the kids let me know it’s time.  It’s hard to do that, sometimes, when it costs so much to go to the fair, but at the same time, we have beautiful memories of a day spent together laughing and having fun.  It’s hard to put a price tag on that, especially since for so many years, Mandy and Cory were far away and not able to go.  Having them all with me today was so special and a day I’ll never forget.

There was one minute today that I felt a little melancholy.  When Casey and Rob are at the fair, someone is with them all the time, except when they are riding. (I watch them get on and then go to the exit and wait – it’s awesome to be able to do this!)  I saw some women sitting on a bench, enjoying each other’s company while their kids ran around the rides.  For just a second, I wondered what it would be like to come to the fair and be that relaxed.

It’s not that I was jealous.  More that I was curious about a life like that.  But, as Cory pointed out, I could do that, if I wanted to – just go to the fair without the kids sometime.  He was grinning and I had to laugh, but he’s right.  I may wonder about the lives of others, but in reality, they have problems, too.  Maybe not the same issues that we have as a family, but something.

I hope that each of you can find ways to enjoy family time together.  It’s never easy (But I doubt it’s all that easy for “typical” families, either!) but go for it!  Stay a few minutes.  Leave when you want.  It won’t work out all the time, but when it does, you will feel like I do, right now.  Happy, relaxed and so blessed to have the kids that God gave me.

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Autism and Celebrating Another Birthday

Autism and Birthdays

It’s hard for me to believe that tomorrow, my “baby” will be 25!   Unlike Casey, Rob doesn’t seem to care about his birthday.  When asked what he wants, his answer is always “presents.”  Trying to ask for specific things, all the while trying to use a statement (tell me what you want) instead of a question is difficult for both of us.  But, that doesn’t matter because it will his day and I’ll do everything I can to make sure he knows how special he is.

When I think back to when the kids were little, it’s amazing to me just how different they were.  It seems I should have seen the autism in Rob earlier.  I was concerned and even talked to Casey’s neurologist and our family doctor about him.  They both agreed with his history, I needed to wait before I panicked.

For the first three years of his life, Rob managed to end up in the ER every six months or so.  As soon as I would get a bill paid off, he would end up there again.  He tumbled as a toddler and split his forehead open – stitches.  He had pneumonia. He fell down the basement steps and got to ride on a helicopter to a children’s hospital (he wouldn’t wake up).  He had a seizure after getting a set of vaccinations.  He jumped down the steps and broke his collar bone.  Need I go on?   I often said that had he been first, there wouldn’t have been another.

So, when he didn’t talk much, no one was very concerned.  He didn’t have routines that he needed to follow.  He didn’t have sensory issues when he was a toddler.  However, since he was language delayed, our school district put him in their preschool when he was 3.  It was the same one both girls had gone to and he was so proud to be there.  He played beside other kids, but rarely played with them.

But, he followed Mandy everywhere at home.  She would tell me what he wanted, so he never needed to use his voice.  She was the ultimate big sister to him and he still leans on her.  The years she was in Texas were especially hard on him.  Casey knew Mandy would come home and would watch the calendar for those dates.  He just knew she was gone.

Since he didn’t show many signs of autism, we waited.  He was going to preschool and getting speech.  There wasn’t much I would have done differently had he had a diagnosis.  When it was time for Kindergarten, though, the signs were becoming more obvious.  He went to our county board of DD Kindergarten and had a one on one aide that he adored.  I also made an appointment with the neurologist for him.  It didn’t take the doctor long to agree that he had autism, too.

I wasn’t surprised.  I didn’t feel much of anything, really.  It was what it was and a diagnosis didn’t change any of us.   It wasn’t till a few days later when Casey had one of her hours long meltdowns that it occurred to me he may start doing that, too.  And I cried.  I wasn’t strong enough to handle two screaming, kicking kids.

God was watching over me.  While Rob does have his issues, meltdowns have never been one of them.  He rarely gets angry and when he does, he tends to cry (like his mom!).   Rob was happy to go to school with Casey and his teachers were awesome with him.  His aide, Beth, went with him and stayed with him through elementary school.  He still talks about “My Beth” – that’s what he always called her.

Sensory issues were Rob’s biggest obstacle.  He hated most shirts, but jeans and tennis shoes were no problem.  He wore a hat everywhere he went.  He had hunter ear protection that he wore through his school day to add pressure to his head and block unexpected loud noises.  He had a huge platform swing in his classroom that he used all of the time.  Beth discovered while he was laying in his swing, he could spell and read and recite math facts much easier.

When he became stressed, he squeezed his jaw or flapped at his ears.  He still does the flapping, but now it’s by his jaw and it doesn’t happen often.  In some ways, his sensory issues have gotten better.  He is willing to try new foods, new places and new clothes, for short periods of times.  In others, it’s become harder for him.  Crowds bother him more.  Being hot is extremely uncomfortable.

Rob is a grown man now, but that little boy is still inside him.  He still loves Dr. Seuss and his Power Rangers.  Willy Wonka and The Wizard of Oz will always stop him in his tracks.  He still builds trees and power poles with his Legos.  “Where did Robbie go?” will always get a smile and giggle from him.  He is still Mom’s boy and still leans on Mandy.

He doesn’t like to get dirty like he used to.  He hates anything gooey on his hands.  He doesn’t like to wear jeans (though part of that is trying to find a pair that fits well!) and doesn’t always have a hat on.  His interests are not those of a grownup, but he is a happy guy.

To him, the best part of his birthday will be that Grandma Rose and Grandpa Mack, Mandy and Cory will be here and we will have Long John Silver’s for supper.  He’ll grin as we sing to him and blow out his candles.  He’ll open presents and say thank you.  And then he’ll be done with being the center of attention and disappear into his room.

I know many of your reading this have little ones.  I know you have days when you wonder how you can keep going because you are so darn tired.  I had those days and I can tell you, it does get easier.  It may not be a perfect life, but no one has that.  You will always have hard times, but you are strong enough to handle it.

I didn’t always believe in myself, but we are making it, day  by day.  I can sit and remember how far the kids have come and some day, you will do that same.  Your journey won’t look like ours at all, but it will still be a good one.  The ups and downs average out – even when the downs seem to never end.  Always believe in yourself and your child.

As for me, I’m going to go wrap Rob’s presents and hope he likes them.  I’m going to look at his scrapbook and know that little boy is still around – as cute and as ornery as ever.  I’ll be grateful he doesn’t climb to the roof and jump anymore and that he finally seems to have a small awareness of danger.  Some day, you will look back and be proud your child has come just as far.

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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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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?

 

 

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Welcome to Autism, Apples and Kool Aid

Autism and Siblings

Welcome to the first post on Autism, Apples and Kool Aid. I’m the mom of three amazing kids – and a wonderful son-in-law! My oldest daughter, Casey, and my son, Rob, both have moderate autism. Our autism journey started almost 28 years ago and what a wild ride it’s been!

I’m not here to tell you that autism is easy – but it isn’t the terrible disaster that so many seem to think it is, either. My hope for this blog is to share my circus in the hope that families who are on this journey with us will share our laughs and our tears – but ultimately realize all of our kids are our most precious gifts.

The name for this blog came from one day that is stuck in my memory. A day which has proved that, sometimes, autism sucks, but sometimes, it’s our reaction that causes more problems.

Rob was 13 or so at the time and we had just finished remodeling our dining room. I was in another room when I heard thump, rumble, rumble, crash, splash and Rob’s giggles. What the heck? As I ran towards the sounds, I heard it again – thump, rumble, rumble, crash, splash and giggles. I found Rob in my beautiful dining room with an apple in his hand and red Kool Aid running down my walls.

It took a second to see the plastic cups of Kool Aid lined up on the table and for the dots to connect. “Don’t throw that….” I shouted as he launched the apple across the table. It connected squarely with the next cup in line. The cup flew in the air, the Kool Aid went everywhere and Rob doubled over giggling. I just stood there and looked.

When he picked up another apple, I sprang into action and grabbed the apple from him. He laughed, hugged my legs and took off for his room. I was left standing there watching red Kool Aid run down my walls, off my curtains, down my windows and drip from the ceiling fans. I was furious! What in the world possessed him to do something like this? He had gone bowling a few days before and I guess he decided to make his own at home.

It took me forever to get the room cleaned up. All the while, I’m mumbling not so nice words under my breath. Steam was probably coming out of my ears by the time I got done. I mumbled about autism… about red Kool Aid… about sticky floors… about not being able to handle this anymore. I’ll admit, my anger took over. Now, this is funny. At the time, I was ready to explode.

Finally, the room was clean. I was sweating like crazy and still mad about the mess…. and I flipped the ceiling fan on. You guessed it – in my anger, I had forgotten to clean those blades…. and little spots of Kool Aid flew all over the room again. My temper exploded and I began to clean again.

But – after the anger passed, I realized that day taught me a valuable lesson about living with autism. Often, our reactions to what happens make problems worse. Had I stayed calm, I would have thought to clean the blades (I hope!). I wouldn’t have been so hot to flip the fan on. Had I just cleaned the room and laughed with Rob, I would have only had to do it once.

I’m not always successful, but I try – really hard – to make sure my reactions to my children’s behaviors don’t cause more problems for all of us. Sometimes, my reaction is simply to walk away until we are all calm. Walking away isn’t always bad.

So, welcome to my circus. Come back to soon and let’s learn together how to live, laugh and love with autism!

Jen