It happened again. A day that could have been so much fun for Rob was ruined, simply because he couldn’t ask for help when he needed it. As much as he is able to talk, there are times when his autism and the verbal difficulty he has flare up and he gets frustrated.
Rob and Casey were going swimming with friends from Hopewell – the workshop they attend every day. I was already a little concerned because they were going to a different pool – one that was just a pool and had none of the activities that Rob really enjoys (mushroom fountains are his absolute love – all the water pouring directly on his head is heaven to him!)
He was so excited to think about going swimming. I’m sure he was a little disappointed that it was a new pool, but he jumped right in the pool. Staff told me he got right back out and soon began pacing and yelling. Tory tried to help him, but he was unable to tell her what he wanted or needed. He wouldn’t even talk to Casey.
I got a message that he was upset and decided to go get him. I didn’t want his anxiety to ruin the fun for the others in the group. When I got to him, he started asking “get the van? get the van?” so I knew his anxiety was sky high and not likely to come down any time soon. He didn’t want to leave with me, but he didn’t want to go in the water, either. I think he probably did want to swim, but since he wouldn’t, I told him to grab his stuff and we would just go home.
As we were driving home, Rob had his hand laying on the open window of the car. That’s the only way I knew what really happened to him at the pool. I saw the bee sting. When I could pull over, I asked him to show me his hand. “Let me see! Let me see!” he said and held his hand out to me. When Rob is sick or hurting, that is how he asks for help.
The stinger was out, but the hand was red and slightly swollen. I noticed he sounded congested when I picked up him, but thought he was having sinus issues. Nope – he was having a reaction to the sting. He and Mandy used to be severely allergic to insects, but he hadn’t had a reaction in a long time. He had gotten stung at the pool and he simply couldn’t tell Tory he needed help.
Instead, the pain got him worked up and he paced. And he yelled. And his anxiety grew. All because of autism and verbal difficulty. Can you imagine being in pain and not being able to tell anyone? Not being able to ask for help? Imagine the frustration and anxiety you would feel. And I hated autism again for ruining his fun.
Had he been with Mandy or I, he probably would have said “Let me see” and we would have known something was wrong. He just won’t (or can’t) say that to others. So, because of autism, he suffered. And I thought about the other times he was unable to ask for help when he needed it. When he jumped down the steps and broke his collar bone. When his foot issues start to flare up (if I can get ibuprofen in him early enough, the pain doesn’t get too bad). When his head hurts. And I think it just isn’t fair!
I know – life isn’t fair. But it’s so hard to watch someone you love in pain because of verbal difficulties. He can say so much of what he needs, but not always. Sometimes, he just yells and gets anxious. Sometimes, he cries. Sometimes, Casey screams. And I’m left trying to read their minds and find the issue.
Autism has taught me so much. I am a better person for loving kids with autism. I have met so many amazing people and learned about myself. Autism has also taken things from me. For me, the worse thing taken is the kids being unable to ask for help. When I do finally realize the problem, the guilt comes.
Why didn’t I figure that out quicker? How could I not realize they are in pain? My parents tell me that’s crazy – it’s impossible for me to know everything about them. My head understands that – my heart feels the guilt. And you know guilt is harder to get rid of.
I’ve learned to “read” them – just as every other autism parents has learned. I can tell by their eyes if something is wrong, if they are sick, if a tantrum is coming. I can tell when they are happy or sad or mad. I can see Rob’s anxiety and when Casey is getting overwhelmed. I know all of this, but I still feel guilt when I don’t know it soon enough.
Thankfully, Rob’s hand is fine. While he did cough a little, he didn’t have a bad reaction to the sting. He will probably never go back to that pool as he will always associate it with a bee sting. But, that’s ok. We’ll go somewhere else. Casey will be happy going anywhere.
We’ll always struggle with verbal difficulties. I will be thankful for what they are able to tell me. I will keep asking questions and hope to learn more about each of them. We’ll keep hugging and laughing. I’ll read stories to them and enjoy the giggles when Elmo saves the day again. That’s what parents do.
And I’ll try to push the guilt away when I don’t know what’s wrong. I’ll try to remember the good things about autism when I’m so sick of it I could scream. Try to do the same. Life isn’t always about bee stings and ruined pool trips. Sometimes, it’s bear hugs and twinkling eyes and McDonald’s fries.
Jen, Enjoyed reading this article. I did not know Rob had times when he couldn’t tell anyone what was troubling him. I loved reading how you handled this. I saw where someone less experienced would be perplexed. Thanks again for sharing.
Terry, Both kids have difficulty with speech. Rob has trouble processing words he hears and it takes him a long time to answer questions. He has a hard time telling me what he wants or needs at times. Casey talks more than he does, but still has trouble at times, especially when her senses are overwhelmed.