6AM Alarm goes off. Go to kitchen for my morning fuel of espresso.
6:15AM Make breakfast for Tristen
6:30AM Scott heads out the door for work—kiss him goodbye. Get T’s lunchbox packed and backpack ready
6:45AM T wakes up happy and listens the first time when I ask him to get in the shower. Get him showered and prompt him through dressing independently. He sits to eat breakfast while browsing YouTube.
7AM Print out his schedule for the day and go over it with him. He transitions better when he knows what to expect after school.
7:20AM Get dressed while asking T to finish eating the fruit on his breakfast plate. He is in the kitchen looking for more slices of ham.
7:30AM Brush his teeth, give T his vitamin supplements and we are out the door.
7:40AM Drop T off at school.
7:55AM Back at home. Start load of laundry, then clean up breakfast dishes while making a smoothie.
8:30AM Hit the treadmill with motivation from iPod. Trying to get back in the groove after a knee injury from summer.
9:30AM Water plants, then feed and wash dogs. Water is low in pool—throw water hose in.
10:15AM Shower and dress. Get to-do list out while I check e-mails. Review the latest discussions and research in the online autism groups.
11AM HEPA filters come in—change air cleaners in house.
11:30AM Start my phone list:
Call insurance company to see if appeal letter received for denying a treatment claim for T—am told it is still under review (try not to feel frustrated when this is an ongoing dilemma for years).
Make a call to compound pharmacy for B-12 injections to be ordered.
Call my Dad—we talk about plans to get family together for dinner this week.
Call to reschedule T’s immunologist/allergy appointment, which conflicts with a new therapy evaluation coming up.
Call to follow up on his physical therapy evaluation—they have not yet received the prescription from his doctor. Call the doctor’s office to see if they can fax that ASAP.
Call an autism mom to ask if she signed up for an upcoming conference in September yet.
Last call to Children’s Baylor house to see about making up an occupational therapy session (due to the Labor Day holiday they will be closed).
1PM Grab some lunch to munch on while looking for a few new songs to share with music therapist T has shown interest in. Go through the day’s mail.
1:30PM Gather last of summer pictures to share with speech pathologist to use in asking T questions in their sessions. Throw a few quick labels on to help identify the people in the photos.
2PM Out the door again to run car through carwash, pick up Scott’s dry cleaning, pick up extra inhaler from pharmacy, drop package at post office and drive through the bank.
2:30PM Walk in the school—sign in and drop off extra inhaler with school nurse for upcoming allergy season.
2:40PM Talk to teacher about his day while he is getting backpack together. Discuss coordinating volunteer bucket this year.
2:55PM Make T a snack while praising him for his good day at school. We place a token on his board for this positive behavior. He has to receive five to earn a visit to Half Price Books.
3:15PM His special-needs nanny arrives. (She is actually a habilitation attendant but for the sake of an easy explanation to friends and family, we call her a special-care nanny.) We have two that alternate through the week; they are a godsend to our family. This program allows a much-needed balance and respite for Scott and I that we waited to get to the top of the list for eight years. We feel extremely blessed to have found such caring people involved with his daily progress.
3:30PM Music therapist arrives for an hour and has to redirect T a few times in music and he is participating.
4:30PM Go over schedule and worksheets with nanny.
5PM Start dinner while listening to them work at the table. Make a different plate for T because he is eating gluten free and has sensory issues with a lot of food textures. Make a call to schedule a bowling date for T and a long-overdue lunch date with a friend from church for me. Update our monthly calendar schedule on fridge.
5:45PM Scott arrives at home and we talk about our days.
6PM Massage therapist arrives for T’s last session of the day. These biweekly sessions help for calming and sensory adjustment.
7PM Eat dinner. Scott cleans kitchen while I fold laundry. Feed dogs again.
8PM They go for a swim while I check online for my upcoming classes. Check e-mails again. Send a few faxes to T’s support program. Make a grocery list and another to-do list for tomorrow.
8:30PM Receive an all-too-familiar phone call. Someone’s friend has just been diagnosed with autism—could I please call them or e-mail them? Call the new parent and encourage them to contact NAA-NT (National Autism Association of North Texas) and attend the monthly meetings and support groups. I offer encouragement and advice while she cries. I feel her grief, but tell her there is hope and support in active intervention.
9PM Say good-bye to nanny, then read a bedtime story while Scott makes it funny with sound effects. T says his good-night prayers.
10PM T is finally asleep—too late to watch our movie rental, so we watch news. Scott takes out trash while I wash my face.
10:30PM Go through T’s school folder and write about his evening to teachers, then read a few chapters in my current book.
11PM Wake Scott up on the couch and we head to bed. We pray and I go to sleep feeling at peace.