After 7 years of navigating our son’s behavior and trying one strategy after another to no avail, we finally got a diagnosis:
We knew there was something ‘going on’ with him. We knew he was a bit different. We knew that after trying different strategies social workers, teachers and random people suggested to correct his behavior-which apparently isn’t always socially acceptable-we had to step up our game.
The role of Caregiver seems very natural to me, but never imagined becoming a caregiver and advocate for TWO people. It has been a roller-coaster ride of emotions and experiences dealing with a combat-veteran AND a child with Asperger’s. Sometimes, I find it quite interesting to see the way my husband and son interact with each other. But I think I’ll leave that for another post. 🙂
Back to the topic:
Many times children on the Spectrum have sensory issues and can be sensitive to certain sensory inputs. Elijah has always been sensitive to loud noises. He would hold his ears and just say something along the lines of:
“It’s too loud.”
This would be a clear indication to us that something in his general area is overstimulating his senses and he’s starting to get overwhelmed. It has taken us a while to understand this concept, considering that we didn’t have a definitive diagnosis up until last year shortly after his 7th birthday. Elijah has been able to communicate his sensory overload to us quite well. And we’ve noticed certain cues he will give off when he gets overwhelmed. We are aware of his sensitivity to sound, smell and textures. We are also aware of how he expresses his anxiety when he’s stressed.
But sometimes it’s really difficult to separate symptoms from the Asperger’s and some potential physical sickness!
Is it the Asperger’s or is it something else?
When Elijah was a toddler, he was plagued with ear infections. I mean, there were times when he’d have an ear infection and we wouldn’t even know he had one, because he didn’t just say that his ears hurt. He wouldn’t pull on his ear, cry, scream, or show signs of fever or anything else that would raise any concerns. One time I took him to see his doctor for a well-child check up and when she looked in his ears she was taken aback by the fact that he didn’t even flinch- his ears were so red. Come to find out, he had yet another ear infection. Of course, times like these have made me feel completely incompetent as a mother.
How did I not know my son had another ear infection?
How did I not realize he might be in pain?
Why didn’t I take him to the doctor sooner?
How long will he be on antibiotics this time?
That is why I have made it a priority (among the gazillion other priorities I seem to have) to pay more attention to the ear infections in our lives! A few weeks ago, Eli started to hold his ears shut and tell us he hears a “beeping noise” in his ears. At first I thought, well it could be some kind of sensory overload and that’s how he’s trying to cope with it.
Then my husband got an ear infection!
We still weren’t too worried at that point about Elijah’s ears, because I didn’t see any wax buildup or drainage like I used to see. Then his ringing in the ears calmed down for a couple of weeks- until about 2 weeks ago. Eli had these repeated incidents of ringing in his ears and he would clasp his hands against his ears, shut his eyes and cringe: “Ahh, that beeping noise is back again!”
NOW, I start to get concerned; because he looks like he is in pain! When I asked him whether his ears hurt, though, he said no. I asked him every time the ringing in his ears would come back, and every time he would say it doesn’t hurt. Then I thought about that ONE time I took him to the doctor for a well-child check up!
What if he isn’t telling me that he is in pain?
Would he tell me?
Should I keep asking?
Should I just look and see?
Should I check his temperature?
Should I keep him inside and not allow him to go to the park with his friends for a day or two, just to be sure?
How do I know whether it’s the Asperger’s or something else?
So, the super-protective mother I am made an appointment with his PCP. Come to find out, his ears are completely clear and his tonsils look great. I swear to you, sometimes I have the feeling she thinks I suffer from Munchhausen Syndrome by proxy!
I am trying to find my place in my son’s little world, where I can be his caregiver and helper NOT his caretaker! For this to work, I need to find avenues that will help me decipher whether a new sign or symptom is because of the Asperger’s or something else.
What have you learned on your journey? Share your stories and tips with us.
Disclaimer: Everything I share is solely based on my personal experience and is for informational purposes only. This post contains affiliate links. For more information, please view my disclosure policy.