He woke, comes down the steps sounding like an elephant saying "Ees" over and over again.
He immediately goes to his "black computer" which is his iPad (lifeline to living). Danny finds the exact track on youtube that he want to watch/listen to and begins his rigorous pacing around the house *through the hallway - through the family room - over and over again.
Around 4:20 am - I was not happy... I notice that his pacing was fast. His voice is rising as I continue to lie still on the couch praying that he may go back to bed (I always think a miracle may happen, but truth be told, once he awakens no matter what time- he is up for the day unless I give him more meds to induce sleep). My general rule is if he wakes after 3am, I do not medicate him back to sleep.
You would think after 20 years that I might know, and just get up... I'm stubborn that way.
So much for that extra hour.
Once I understand that his "ears" are hurting noting the his sounds of "Ees" and he wants me to use a q-tip and sing (he thinks that makes the ear infection go away). I need to listen carefully - his sounds make sense to me. I know that he wants me to get a q-tip I know that his ear(s) are hurting and I know that I better start moving or things will get out of control.
I quickly get up, unlock the kitchen, gather some q-tips and re-lock the kitchen door.
He makes noises to remind me that I need to sing "Where is Thumbkin" prior to that q-tip entering his ear. The sound of me singing that song relieves his anxiety of the q-tip entering his ear.
I sing as softly as possible the words to "Where is Thumbkin" and gently tickle the inside of each ear with the q-tip to try and identify if he has pain, and if he does, which side the pain is coming from (or both). It seems as though the left side is worse. Not sure - he is so sensitive with both sides today... I quickly notate in his daily notes that pain seems to be originating from the "left ear" and to remind myself to re-check later.
I quickly go back to the kitchen - unlock - crush three tylenol, dump the powder into his "pink yogurt" which he is already asking for in his own way. It is taking longer today because of the tylenol to help ease some of the ear pain - get his ice water and re-lock the kitchen door to feed him the pink yogurt with hidden tylenol and ice water. Once he is finished, the empty yogurt cup/spoon and empty cup with ice must be brought back to the kitchen because he has some sort of fear/anxiety if it is left in the family room or out in the open for him to see.
It always seems as though hist ear infections start on a weekend when the doctor isn't until Monday?
Wondering if this ever happens to others as well?
The pacing never stops... I wait 30 minutes and then give him first set of am meds as the noises from the reflux are now so loud, I don't want to wake his dad. I can literally tell where he is feeling his pain from what I hear. His throat must burn, he continues to swallow non-stop and makes faces that are so painful looking that it hurts me to look. Also, certain times he tries to swallow, but his throat must be swollen inside he can't seem to swallow or catch his breath, the noises he makes are from his throat and are sharp and continual. Selfishly, I have to admit that those noises go right through me. He doesn't know that these noises must make the pain worse, but he doesn't understand and keeps making them which must antagonize his sore throat, etc. His stomach must also hurt because he sits at least 10-20 times on the toilet and thinks he has go go, but it must be actual stomach pain because nothing comes out. Unlock kitchen - reflux meds crushed in pink yogurt, ice water - lock kitchen - give meds with yogurt, monitor ice water - unlock kitchen - dirty stuff in sink - lock kitchen.
As we breathe air to live, pink yogurt followed by ice water is our "air" to my son.
Once he has a pink yogurt (no matter what time or whatever meds), it must be followed by a cup of ice water. Ice water needs to be a separate post.... that is a long story in and of itself.
He continuously asks for pink yogurt until I give in after another 30 minutes for his next set of am meds at 5:30am.
Forward 19 hours... the day has been long, he is still uncomfortable. It is now 12:29am and he sleeps lightly. A headache awakens him several times as he asks for "washcloth". I soak a washcloth with cold water. I wipe his forehead, the crown and back of his head, and down the center of his back to his tailbone back to the top of his head. I do it again and stop. Several minutes later, he asks again - re-soak the washcloth with ice cold water and follow the pattern again. He settles in for more sleep.
I hope tomorrow is an easier day for him. I hope he has a better day ....
A glimpse into the first hour of our daily lives. Autism is never ending. . .
**Pink yogurt which is fed to him at least 20 times per day is Yoplait Strawberry Thick and Creamy yogurt (no lumps).