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Settling in to new routines and schedules

It's hard to believe how quickly the first weeks of school have gone by! This year, we have kids in 3 different schools and they take 4 different modes of transportation to and from school (none of which is me driving, haha). I thought that would make things completely crazy but it has actually been really nice. Instead of having to rush to get 3 or 4 kids out the door all at once, I can check in with each of them individually to make sure that they have everything they need and are ready to go. It has made getting Raya ready in the morning SO much easier than the past 2 school years.

One of the struggles she has had in the past is difficulty focusing on the things she needs to do to get ready for school in the morning. She was (and is) very easily distracted. Last year was especially difficult. Even with frequent reminders throughout the morning, I would find her playing with toys because she had gotten distracted and forgotten what she was supposed to be doing. It wasn't that she was trying to be defiant or anything, she just had a very tough time focusing long enough to finish a task, especially when there were multiple step instructions given. For example, if I told her, "You need to get dressed, put your pajamas away, and bring your pump downstairs," she might get halfway through the process of getting dressed and then get distracted and forget to finish.

There were 2 things we did to help remedy this problem. First, when we noticed that she was having trouble consistently following multi-step instructions, we broke down her instructions into single or two step instructions. Being given too many tasks at once overwhelmed her. Second, we made checklists. She and I sat down together and wrote out a sequential list of her morning routine, her after school routine, and her bedtime routine. Each one was on a 3x5 note card that I meant to laminate but never did, and we put them all on a small locking ring.

She was surprisingly excited about the cards when we first did them. She carried them around with her in a little purse (because she always has at least one purse full of random treasures with her at all times) and she would read them out loud and say "Check!" when she finished one. She used them for the last few weeks of school and it really did seem to help her complete things. I have no idea where those cards are now but so far this school year, she has done an amazing job of getting up and getting herself dressed in the morning with minimal prompting. She's been doing so well with it that I had almost forgotten what a struggle it used to be to get her up and dressed each day!

Since the checklists were so helpful to her, I decided we would carry that over into household chores during the summer. We had a schedule that we tried to follow as well as we could, and part of the daily schedule included everyone cleaning an area of the house. The younger girls teamed up with the older kids most of the time. Each area of the house had a checklist, so they'd take their checklist and cleaning supplies and go down the list, marking off each task as they went. Having clearly defined expectations made everything go so much better than when we just tell them to clean their assigned area and leave the definition of "clean" up to their discretion.

Due to Raya's school schedule and when her lunch falls in the school day, we have had to make changes to her tube feeding and eating schedule. One of the challenges was that we really did not want her to be connected to her pump during PE or her other specials, but with the lunch schedule, there was no way we could follow the same tube feed schedule we used the last 2 years and still have her disconnected during PE/specials AND have time for her stomach to empty enough to be hungry at lunch time. After much consideration, we decided to give her a small bolus feed with a syringe in the morning while she waits for the bus, followed by what is for her a fairly large water flush. We have never really done syringe boluses with her for a couple reasons. First, they tend to be messier, especially with a wiggly kid who accidentally bumps the syringe or extension tube, sending formula flying through the air and onto everything in a 5-10 foot radius. Second, her stomach just never tolerated being fed that way, and third, she was much too busy to keep her still long enough to feed her as slowly as her stomach needed to be fed. Since this is a new thing for her, we started with a small amount of formula that is enough of a "snack" to get her through to her first pump feed of the day at school. What I'm hoping is that as the year progresses, I will be able to get her to eat at least some form of breakfast either in addition to or in place of this small formula bolus.

She gets a mid-morning tube feed, and then a couple hours later, she has lunch. She is so blessed to have the most wonderful aide who sits with her during lunch to help her stay focused on eating. Her feeding therapist and I developed a good system for her lunch to keep her motivated and interested. This year, she has blown me away with how determined she has been to eat her food at lunchtime. She's been pretty casual about it in the past, but so far this year, she has  worked hard to finish most or all of her food in the very short 15 or 20 minutes they get for lunch time. There have even been days where she has asked her aide if she could stay in the lunchroom and keep eating instead of going out to recess. We're working on finding more things she can take for lunch and instead of taking 2 different foods, she has started taking 3. It's so exciting to see her progress with eating lunch!

She gets another tube feed in the mid-afternoon at school, and then comes home a couple hours later. The after school hours have been a bit challenging so far but we're getting things figured out, I think. Raya needs a lot of one-on-one attention after school and that has made things a bit tricky when it comes to helping the older kids with homework and things like that. Since we've learned over the years that late afternoon is when her stomach is working the best, we are trying to capitalize on that by getting a higher number of calories in during that time frame. Ideally, we need her to eat a meal after school. That has proven to be easier said than done when we're also trying to get her to do at least some of her homework and she's at the point of letting out all the pent up energy she's held in all day at school. Donny's work schedule changed recently and he's now home before the kids get home from school, and that has been AMAZING. I've also had some chats with Raya's OT about strategies for organizing her little system after she gets home so that she can pull herself in enough to at least not spend 2 hours jumping up and down. (yes, that has actually been happening) Her OT told me this week that she sees the same pattern every year, and that the 3rd week of school is always the toughest. We have certainly seen that but things seem to be calming down a little bit and we are trying some of the strategies the OT and I talked about this week. The after school hours are really hard.

As Raya gets older, it's critical for her to learn to listen to her body and respond to what it's telling her. We are doing as much as we can to help her with this process. One of the things we're doing is allowing her to choose what and how she is fed after school. She can choose a pump feed, a syringe feed, or a meal by mouth (or eat a snack while she's getting formula if she wants). It's been really interesting to see what she chooses from day to day. When other people are over, she tends to choose getting a pump feed because it draws the least amount of attention to her and whether she wants to admit it or not, it allows her the most freedom to do other things, like play with her friend who sometimes rides the bus to our house after school. Most days, she has chosen to eat, to get formula with a syringe, or to have a snack while she's getting formula. It's pretty great to see her making these choices, especially when it's clear that her decision is based on how her stomach feels at that particular moment. Today, she asked for a syringe bolus. One of the reasons I don't care as much for gravity feeds is that I have always had a hard time controlling the rate and sometimes that means the formula goes in too quickly, which can end in vomit. Nobody wants that. Since she's asking for gravity feeds though, I'm getting more practice and we're getting better at it. Raya is getting better at not bumping the syringe and extension, and I'm getting better at monitoring the rate. She usually does her math worksheet while we do the gravity feed, and I think I sometimes annoy her by asking how her stomach feels several times while she's working. Better than having her puke though! Today was amazing. She tolerated an entire bolus feed in about 20 minutes, followed by another ounce of water and still felt great! After what was a rough summer on her body, it's amazing to see how well everything is functioning right now and we're taking full advantage of it. Her gut is working better right now than I dared imagine 6 or 7 years ago. I wish I could go back and give my 2010 self a peek of how she's doing now. I am so proud of my girl!


  1. Did I really just read six or seven yearrrrrs ago, this the first time I've read your blog and wanted to cry, not that I have a choice, but I don't know if I can be that strong. This just year one and its been a nightmare.


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