Rebecca Einstein Schorr became a reluctant stay-at-home-mom when her son Ben (14), who is on the autism spectrum and has Tourette’s Syndrome, and his two adorable sidekicks, Lilly (11) and Jacob (7), needed more from her. This is a day in her life.
5:45 a.m. “Mom?” “Mom?” Ben knocks on the door to see if I have any other shirts for him to wear. He doesn’t like how any of the two dozen clean shirts in his drawer feel today. Forgetting that he doesn’t detect sarcasm, I tell him I have one in bed with me. He comes over to fetch it. It’s going to be a long morning.
5:59 a.m. “Mom?” “Mooo-ooom?” Ben is back in my room, wanting to know if I’ll be picking him up early this afternoon. “Is it Tuesday?” I ask, “Because if it’s Tuesday, you know that you have pool therapy and that I will be picking you up early.” “I just wanted to check to make sure.”
6:15 a.m. “Mom?” Ben is back again. He wants pancakes for breakfast. I don’t make him breakfast on school days. I remind him of this and he reminds me that he wants pancakes for breakfast. I remind him that on school days, I don’t actually care what he wants for breakfast.
6:30 a.m. The door to the garage slams closed and wakes me up for the fourth time. Ben is outside, waiting for the bus. The bus doesn’t ever come before 6:41 a.m. Ever.
6:42 a.m. “Mom!” “MOOOO-OOOOOOOM!!!!!” “I think I missed the bus. Call the bus company!” I explain to Ben that he’s been outside, watching, for the past 12 minutes and there is no way that he missed the bus. Just then, I see the bus from my bedroom window. Ben runs down the stairs, screaming that it’s going to leave before he gets outside. It doesn’t. I go back to sleep. Again.
7:10 a.m. Awakened for the sixth time. Lilly yells “goodbye!” and the door slams shut.
7:40 a.m. Now my alarm goes off. Jacob’s alarm goes off at 7:20 a.m. so that he has his prerequisite 20 minutes of playtime before I get up. Daily snuggle time commences.
8:25 a.m. With Jacob out the door, I grab something to eat, go down to the treadmill to put in a couple of miles, hit the shower, and get dressed for the day.
10:00 a.m. Go through yesterday’s mail. Read the denial letter from the insurance company regarding Ben’s physical therapy. As many as 30% of kids on the autism spectrum have hypotonia (extremely low muscle tone); Ben is one of the 30%. He has the muscle tone of a 6- year-old and the stamina of an 8-year-old. Which would be fine if he was either 6 or 8. He will turn 15 in June. Ben completed 12 weeks of PT and the physical therapist had prescribed another 12 weeks. The insurance company had denied the pre-authorization in December and we had appealed the decision. Today’s denial was in response to our appeal.
10:15 a.m. Speak with the rehab insurance person assigned to Ben. She calmly explains that the denial letter from our primary insurance is necessary for Medicaid to cover the expenses. Yes, we are a Medicaid family. And thank God. Families who are rearing a child on the spectrum spend an average of $17,000 per year more than rearing a normally-developing child. Having Ben on Medicaid helps defray many of those additional costs. Once our rehab facility receives their copy of the denial, they’ll kick it over to Medicaid. One HUGE headache avoided.
11:00 a.m. Mundane errands, lunch, laundry, writing, and dishes.
1:30 p.m. Pick up Ben from school. We go through the drive-thru so that I can get him a snack. Even though I tell him it’s not a weekly thing, we go nearly every week. He is always hungry and the snack helps take the edge off his hunger and keeps him in a good mood for therapy.
2:10-3:00 p.m. Pool Therapy. Ben loves being in the water and having his therapy in the pool enables the therapist to push him a bit harder than if he was on land. He is exhausted afterwards, and asks if he can just go to bed when we get home. The answer, of course, is no.
3:38 p.m. Drive to the psychiatrist to pick up a prescription. Ben takes a cocktail of prescription medications. One of the meds is a Schedule II Controlled Substance, meaning among other things, the Rx must be filled out correctly because it cannot be called in to the pharmacy. The psychiatrist had forgotten to sign the Rx on Friday which I didn’t discover until I tried to fill it on Sunday. Grrrrrrrrr. So I have to make this extra trip to get the signed prescription.
3:56 p.m. Pick up the prescription. I check (three times) to make certain that all of the information is correct and that it is signed.
4:21 p.m. I arrive at CVS. It’s like Cheers. They all know me. Jordan (the pharmacy tech) checks to see if they have it in stock; it’ll be ready in a couple of hours.
4:30 p.m. Sadly, no time for a real dinner tonight. My friend, Phyllis, reminds me on a regular basis that it’s OK not to serve a homemade meal every night. Yet I still feel guilty as I drive through McDonald’s to pick up dinner. Takes a little bit longer tonight, because they screwed up the order and put cheese on Lilly’s burger.
5:00 p.m. Grab swim bag and head out the door with Lilly and Jacob in tow. This is one of the few extracurricular activities that we manage to squeeze in for them because the rest of the time is filled up with Ben’s therapies. It is sometimes a bone of contention for them and I remind them that they can bring it up next week at Sibshops. Sibshops is an amazing national support program for kids with siblings with a disability. We are so fortunate to have one in our community that is specifically geared for kids with a sibling on the autism spectrum.
5:45 p.m. Swim lessons for “the littles.” I use this time to read or catch up on some work. I sit in the back so the kids don’t see that I’m not watching their every move. I look up occasionally to sneak a glance and regularly thank God that we can afford to have someone, with much more patience than I possess, work with them in the pool.
7:05 p.m. Swing by CVS on the way home. Ben’s meds are covered by Medicaid (thank God) so all that is needed is my signature.
7:30 p.m. Ben, freshly showered, is ready for bed. Lately, he has wanted me to read to him before he goes to sleep. No matter how tired I am, I agree. Ben has a great deal of difficulty reading and therefore, tends to avoid books. So when he requests it, I jump at the chance. We are reading Judy Blume’s “Otherwise Known as Sheila the Great.” Ben confides that his English teacher has told him he should be reading books better suited for his age. I tell him that I don’t care what his teacher says because we both know that Judy Blume is all kinds of awesome. (And I silently curse the teacher for not realizing how she is undermining my sweet boy.) I rub his back as I sing the Shema. “Night-night, boy.” “Night-night, mama.”
8:10 p.m. Realize that Jacob hasn’t done his homework. Yes, we have a schedule and yes, I know that I should stick to it. However, this year we have noticed that Jacob really does his best work in the evening. While he does his schoolwork, I make a note to change the schedule.
8:30 p.m. After checking their backpacks for the next day, Lilly and Jacob are in jammies. They have 15 minutes of room activity time, mostly because Jacob requires playtime at the beginning and end of his day. We joke that his future spouse will need to be informed of this in order to have shalom bayit (peace in the home). I put out Ben’s meds now so that I don’t forget to do it.
8:45 p.m. Lil pops in for a kiss goodnight. She likes to have my husband Warren put her to bed though we have all acknowledged that those days are soon to end as she will be 12 in June. She says she feels like Wendy from Peter Pan. Ah, the thrills of having a tween. “Laila tov, Mom.” “Laila tov, Lil.” Jacob puts his stuffies in order and climbs in among them. A few drops of lavender oil on his forehead and he is ready for the Shema. “Goodnight, my sweet Jacob.” “Goodnight, my sweet Mama.” “I hope your dreams are sweet.” “I hope your dreams are sweet.” “I love you so much.” “I love you so much.” “Laila tov.” “Laila tov.”
9:00 p.m. I can barely see straight. I had been hoping to sit with Warren and catch up on last week’s episode of “The Big Bang Theory.” We often use the show with Ben to help him understand social pragmatics, but always watch it first in case there are situations that might not be appropriate for him. However, tonight is not the night. A soak in the tub and a cup of tea are sorely needed. And Ellery Queen magazine.
9:45 p.m. Lights out. Shema recited. Laila tov to me.
