Autism, Ear Infection and More Mom Guilt

It happened again this week – another huge case of autism mom guilt.  And another day that the communication problems that autism causes has hurt one of my kids.

Ever since I was sick a few weeks ago, I’ve been watching the kids closely.  As bad as influenza is going around, I thought there was little chance that one or both of them wouldn’t get it.  But, days passed and they both seemed fine, so I started to worry less.

I was a little concerned about Rob.  He didn’t seem quite like himself, but he never said “hurt” or “Let me see” so I tried not to hover over him too much.  He was eating and sleeping – but his eyes looked funny.  I just had a gut feeling something was up, but he still wouldn’t say anything.

So, I waited.  He went to camp and had a great time.  He came home from the workshop on Monday and said “hurt” and pointed to his ear.  Ok – now we are getting somewhere.  I asked if he needed to see Dr. Myers, but he said “no fanks” and ran back to his room.  If his ear was hurting, it didn’t seem to be bothering him too much.

He didn’t mention his ear again until Thursday.  By then, I knew he was in pain and that it must be bad.  Rob has an extremely high tolerance for pain, so when he finally says something hurts, it’s bad.  Of course, by the time he mentioned it, the doctor was closed for the day and we had to wait.

When he saw the doctor Friday morning, he tipped his head to him (showing him the hurt ear) and said “hurt.”  He had a slight fever and he wanted to sleep.  The doctor said the infection was so bad in that ear that the ear canal was swollen and he couldn’t see the ear drum.  I felt like someone had punched me.

The doctor was concerned his ear drum may have burst.  Rob looked so sad and I was ready to cry.  I truly do know that it’s impossible for me (or any of us) to always knows what’s going on with our non-verbal kids, but the guilt I felt was so strong.  I knew for days something was up with him – why did I wait so long to take him to the doctor?

I have all sorts of excuses.  I thought maybe he had a touch of the flu (my ears hurt terribly!).  He didn’t have a fever (or at least not one high enough I noticed) but his eyes did look off.  He didn’t want to go (when he was little, he saw doctors so often that he cried as soon as we got near an office.  It wasn’t until a few years ago that he and Casey started telling me they needed to see Dr. Myers.) so I thought I’d wait until he told me he needed to go.

None of that matters, though.  The only thing that mattered to me was he was hurting and how to help.  He got meds and ear drops.  I wondered how easily he would let me put drops in the sore ear, but he must have understood when the doctor said they would help because he tilts his head as soon as I mention the drops and he keeps his head tilted for a few minutes to let them get into his ear.

He is taking his medicine without issue.  It’s only been a few days, but I was hoping for more improvement than I’ve seen.  He is talking a little more, but he wants to lay on his bed and not rip paper or play with his iPad.  He hasn’t said anything about his ear.

Truly, I feel like the difficulty we have in communication is the worst part of autism.  The sensory issues are tough at times, but we adapt.  The constant need for the same things in the same way gets old, but we are handling it.  But – when they can’t tell me when they are hurt, it hurts us all.

Even now, he can’t tell me if he is feeling a little better and I can’t tell.  I’m supposed to take him back to the doctor tomorrow if there isn’t any improvement, but how can I tell?  It’s just a guessing game – and this one involves his health and is important.

He has a communication program on his iPad so I tried to get him to answer me with that.  He pushes the off button and covers his head with a blanket.  The last time I went to check on him, he said “Good bye, Mommy Jen”  (translation – get out of my room and leave me alone!)  So I’ll wait and see and hope for a sign that he’s better before tomorrow morning when I have to decide about calling the doctor.

Autism and mom/dad guilt seem to go hand in hand.  I know I feel like I should be able to know everything about the kids – even as my head says that isn’t possible.  My heart argues that a mom who truly knows her kids would know when they are sick or when something is wrong.  I’m tired of the guilt.  I’m tired of trying to out-think autism.

Do me a favor and take my advice.  Do what I’m trying to do today.  Let go of the guilt – it makes you second guess everything until you don’t really know what you are seeing/feeling. Every parent makes mistakes – even the ones whose children are able to communicate.  Don’t let autism make you think that you aren’t an awesome parent, because you are!