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!