So we all know that Nate’s one of the cutest two-year-old kids that you’ve ever seen. (I’m his Mom. I can say that.) And you know that he’s in applied behavior analysis (ABA) therapy for his autism. Right now, Nate receives 15 hours of therapy a week. Though it’s all I talk about on this blog, I’m not sure everyone understands what that truly means in terms of time and energy. So, I thought I’d write about a week in the life of Nate, a snapshot of what it’s like to be a toddler (and a parent!) in our household.
Before I start, it’s time to do a refresher on who’s heading up Nate’s Army. We’ve had some staffing changes and additions since my original entry about it, though the band uniform (sparkly and fabulous) remains the same. Nate’s seven therapists are:
Miss Lisa is a Special Education teacher. (This means she has her Bachelor’s degree though, in her case, she also has her Master’s.) She administered Nate’s ADOS test and is Nate’s team leader. She coordinates all of Nate’s therapy, leads the monthly team meetings, and also works with Nate twice a week.
Miss Alison is also a Special Education teacher. In addition to being a therapist, she’s pursuing her Master’s in Autism. (In this instance, Autism deserves to be capitalized.) I love it because she takes classes at night and comes in the next day ready to apply new things she’s learned with Nate. She sees Nate for 3 hours a week.
Nate has two Early Intervention Associates: Miss Marilyn and Miss Rachel. This means they have an Associate’s degree. Marilyn is pursuing her Bachelor’s degree and Rachel is running after three kids–ages 4, 2, and 5 months–between therapy sessions, which she does during the hours when her husband’s not working. Marilyn works with Nate for 3 hours a week; Rachel has one 2-hour session.
Miss Susan is Nate’s speech therapist. Her specialty is speech but, since Nate’s still non-verbal, she follows the regular curriculum and we hope he gets a little vocal while Susan’s here. Susan sees Nate for 1 hour a week.
Miss Katy is Nate’s occupational therapist. She also administered Nate’s ADOS test. Nate cheers with joy when he sees Miss Katy arrive because her sessions are fun! They’re sensory based so it’s all about getting Nate in tune with his body and activities are less formally structured and more led by what Nate’s in the mood to do. Katy works with Nate for 1.5 hours a week.
Last but certainly not least is Miss Liz, who is Nate’s Board Certified Behavior Analyst (BCBA). She works with Nate and works with me and Chad on how to raise a child who happens to have autism. Liz has been instrumental in helping us with self-injurous behavior, sleep issues (both nighttime and napping), and anything else that confounds us as parents and can’t be answered through non-autistic children parenting books. She sees Nate/our family for 1.5 hours a week.
Now that you’ve got the team, here’s what a typical week in the life of Nate looks like:
7AM This is the latest we wake Nate up. Chad and Nate have breakfast together while I get dressed. Then Chad suits up and heads out the door around 7:50.
8AM We start the week bright and early with a 1.5 hour session with Miss Alison. This is often Nate’s best session of the week. He’s well rested from the weekend and is ready to play with one of his best lady friends!
9:30AM We say goodbye to Miss Alison. I load up a snack cup and water and we head to the grocery store or to run errands, which usually eats up the morning.
12:00PM We get in the car to drive so Nate will fall asleep for a nap. (That’s a whole other blog entry.)
12:30PM God willing, Nate’s asleep for a nap.
3:00PM Wake Nate up. He gets a snack and an episode of Curious George. He has to be alert and happy for….
3:30PM Therapy with Miss Lisa!
5:00PM We say goodbye to Miss Lisa. Nate gets to play or watch George until dinner time at 6.
6:30 – 7:30ish: It’s always a crapshoot what time Chad will get home. On a great day, he’s home at 6:30 but he’s usually here closer to 7 or 7:30. Nate cannot wait until Dad comes home. He greets Dad at the door with a huge hug. He then refuses to let go of Dad. Chad carries him upstairs and Nate waits as Dad changes from his work suit to play clothes. Then the boys play or snuggle or watch teevee.
7:00PM Nate gets 1 mg of melatonin, crushed in a tsp. of yogurt. Without it, Nate doesn’t fall asleep until 10:30 or 11PM. Nate starts getting sleepy about 7:30 and asks to go upstairs around 7:45 or 8. If we’re lucky, Nate’s asleep by 8. If we’re not, Nate’s asleep by 9 or 9:30. After Nate goes to bed, Chad and I eat dinner.
In order to get work done for my consulting business (I write grants for nonprofit organizations), Nate goes to school two days a week. (I also sneak as much work time as possible in during Nate’s naps at home.) He also receives therapy at school, which helps him learn to play with his peers in a productive and appropriate fashion.
6:30AM Get Nate up for school. Eat breakfast, get dressed, and go to…
8:00AM School! On the way to school, I have to repeat the names of his friends, his teachers, and his “special guest” (therapist) for the day so he is acclimated by the time we pull in the parking lot. Without doing this, he melts down when he sees the building.
9:15AM Miss Lisa arrives for a 1.5 hour session of therapy at school.
10:45AM Miss Lisa heads out; Nate continues on with the school’s schedule.
12:00PM Nap. For some reason, Nate will happily sleep in a cot at school but refuses to do it at home. Drives me nuts.
2:30PM Nate’s teachers wake him up from nap. He is always the last kid to wake up. Nate has his snack and plays until….
3:30PM I pick Nate up from school. By the time I gather up his stuff, talk with his teachers, and drive home it’s….
4:00PM Time for therapy with Miss Alison! Another 1.5 hours. This session is usually the hardest. Nate pretty much hits a wall around 5PM.
7:00AM If Nate sleeps in, I wake him up around seven. He gets up, has breakfast, watches George, and gets dressed. We often head out for errands around 8:30 or 9, though sometimes we’ll go do a fun community visit, like play at the park or go to the library.
10:45AM Miss Marilyn arrives! Another 1.5 hour session. This one goes until 12:15; Nate’s used to eating lunch around 11:30 or 12 so I try to fill him up with a snack before therapy starts.
12:15PM Marilyn leaves; Nate eats lunch after which we jump in the car and drive around until Nate falls asleep, which is hopefully by 12:45.
3:00PM I wake Nate up. He’s cranky because he didn’t get to sleep for three hours (it’s what he prefers). But he has to get up and get happy for…
3:30PM Miss Liz!
5:00PM Miss Liz goes home. Nate gets to play and be a normal kid.
6:30AM Up and at ’em, Nate! I wake Nate up. Breakfast with George, get dressed and go to school.
8:00AM Nate arrives at school and starts a 1.5 hour session with Miss Marilyn. This is his only therapy session of the day.
4:00PM I pick Nate up from school and we go do something fun — get a treat, go to the park, go home and play in the yard.
7:00AM Wake up Nater Tater. Breakfast, George, get dressed.
8:30AM Speech therapy with Miss Susan! This is Nate’s only one-hour session.
9:30AM Miss Susan goes home. Nate has a fifteen minute break between this and his next session. I stuff snacks in him and get him happy.
9:45AM Hello, Miss Katy! Friday’s last session is sensory filled fun with Nate’s favorite OT.
11:15AM Therapy’s over for the day. Nate plays for a bit, eats lunch, and goes down for a (driving) nap by 12:30.
3:30PM Nate’s up. We play, we run errands, we go somewhere fun. It just depends on what needs to get done.
9:15AM Just added, Nate has a two hour session with Miss Rachel! The time might still vary (this past week, we did therapy from 8AM – 10AM) but it’s great to have Saturday therapy for two reasons. 1) It means that Nate just has a one-day break (instead of two) between the routine and lessons that therapy provides and 2) Chad can participate in the session because he’s home! This past Saturday was our first session and Nate was terribly confused as to why Dad was there. He kept clinging on to Chad as if he were leaving. Once he figured out that Dad was here to play with everyone else, things went amazingly well!
On the weekends, outside of Nate’s one therapy session, Chad often watches Nate so I can finish up any outstanding projects for my clients.
A day of rest for all. We usually celebrate by breakfast at a local diner or making blueberry pancakes at home. We try to be normal and let Nate take a well deserved break. If he wants to color, awesome! If he’d rather watch Curious George, you bet. It’s a lovely break before the daily grind starts up for all three of us again.
Now, the above schedule doesn’t take into account the fact that Nate is an unpredictable toddler. He’s on a kick lately where he thinks 4AM or 5AM is the ideal time to start the day. When that happens, he’s ready to fall asleep when 8AM therapy rolls around. Nate’s also been known to refuse a nap or two. On those days, he tries to go to bed around 4:30PM. And on other days, Nate wears his cranky pants and there’s no taking them off. And somewhere in this schedule, we adults are supposed to find time to eat, shower, do laundry, clean the house, and pay attention to Archy Cat.
If a therapist misses a session (most often due to team meetings for their other clients or illness), they will make the time up with Nate. If Nate misses a session (he was sick twice), the therapists have no obligation to make up the missed visit. Similarly, therapists don’t have to make up the time when they go on vacation (obviously, because that would defeat the point of a vacation). But we’ve got some great team players. When therapists go on vacation (two went on vacation last week; one this week), other therapists often volunteer to fill in as schedules allow.
The State subsidized, home-based therapy will end on the day before Nate’s third birthday, at which point his therapy will shift over to the public school system. Nate already has a spot in the special ed program at our local pre-school (they were notified in June for budgeting purposes) and will start in May 2012. Because he will receive therapy services there, Nate will be in school for 11 out of the 12 months of the year with a break in August. We may also supplement in-school therapy with private sessions, which will cost an insurance co-pay per session. However, those sessions won’t be coordinated with his in-school therapy in the same way that his current therapy is.
So far, it is not clear if Nate will be in a special ed classroom or if he will be in a classroom mixed with special ed and regular needs children. We’re just taking that one day at a time. In the meantime, with the help of Nate’s awesome frontline army, we’re doing the best we can to help our sweet, perfect boy.