Autism and that Helpless Feeling

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.