A Day in the Life of a Mom With Two Special Needs Kids

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Awhile back I read a beautiful post from my friend Jessica at Jessica Lynn Writes. It was entitled, A Day in the Life With a Toddler and a Newborn. I loved it, and thought it would be fun to do something similar. Why not let my friends and my readers see what a typical day with my two special needs kids is like?

So while not every day is the same, this is what a typical day looks like for my family…

A Day in the Life: Special Needs Edition

8:15 am – It’s 8 in the morning and I can hear my 19 month old daughter talking to herself and playing in her crib over the monitor. I roll over not wanting to get up, but grateful that my kids let me sleep in this long. I wake up enough to check my work email checking for anything important, take a quick look at my social media profiles and the ones that I am paid to manage, and then I get up to start my day.

8:25 am – I go get my daughter from her crib. She’s happy to see me and bubbly like she always is. Getting her up in the morning is one my favorite parts of the day.

8:30 am – It’s time for ABA (Applied Behavior Analysis) therapy for my 5 year old son. He has autism and he does ABA therapy for three hours a day, five days a week. I shut off our home security system and let the therapist in. The therapist and I chat for a few minutes about how my son has been doing recently, and then she takes him to the playroom downstairs to help him change into some clothes for the day and to do therapy.

8:35 am – I set my daughter down in her highchair, hoping that today she will eat more then she usually does. She has a feeding tube from which she gets all of her nutrition, but her therapist wants her to to try to eat by mouth as much as possible. She eats a few bites for breakfast, but as usual it’s not as much as I’d hoped.

8:55 – 9:20 am – I work from home so I settle in to start working while my daughter plays and watches Frozen on tv.

9:25 am – It’s time to prepare for my son’s snack time with his therapist. Every day they work on two new foods or foods that he has trouble with. Today, I pick a toasted waffle with butter and some blueberries.

9:30 am – While my son and his therapist settle in for a long battle about eating, it’s time for me and my daughter to get ready for her appointment with her orthopedic doctor and orthotist. She wears orthotics on her feet and it’s time for a check up!

9:35 – 10:00 am – I get myself dressed and ready to go, then it’s on to help my daughter. I change her diaper and her pajamas and get socks, orthotics and shoes on. Afterward, I start packing toys, snacks, cups, and my daughter’s feeding tube and supplies to bring with us to the appointment. We have two other appointments in the afternoon and I have no idea how long all of it will take. I don’t pack light.

Meanwhile, I can hear my son having a meltdown over the blueberries I picked out for his snack time. There’s screaming, crying, and food throwing going on, and while his therapist is handling it I am worrying how we are going to make our appointment on time.

10:10 am – It’s time to go and although snack time was not over, the therapist grabs the blueberries and puts them in a bag to work on while we’re out. She helps me put the kids in the car and follows behind me in her car to the appointment.

10:20am – On the way there, the kids fight over toys in the backseat and my son has a meltdown over something he dropped and can’t reach. My husband calls to see how our day is going and I fill him in on everything we have going on.

10:30 am – We check in at the front desk and chat with several of the desk workers. We have only lived here a few months, but we are in this office several times a week and know the attendants quite well now. After checking in, the kids go over to play with some toys while we wait to be called.

10:45 am – We do the traditional height and weight check on my daughter and are now waiting to see the nurse and doctor. My daughter is playing with a toy that is in the room, and my son’s therapist is working with him on answering questions and eating the rest of his blueberries while we wait.

10:55 am – The nurse comes in and asks me a bunch of questions. I fill her in on my concerns about my daughter’s walking and balance and show her the notes that the physical therapist wrote up for me to bring to show the doctor. She takes notes for awhile and then we wait again for the doctor to come in.

11:00 – 11:25 am –  The doctor and the orthotist have arrived and my son is on the verge of having a meltdown over the blueberries again. I calmly tell him that his therapist will remove him from the room if he throws a fit. I fill the doctor and orthotist in on the past few months, and all the concerns we have. They take a look at her orthotics and then ask me to take them off so they can watch her walk without them.

My son stays in the room with his therapist while the rest of us go out into the hallway to watch Elizabeth walk. She will walk away from them, but not toward them. We are still fighting separation anxiety with her. They watch her walk up and down the hallway a few times, and then the orthotist leaves. The doctor and I continue chatting about what she thinks and how my daughter is (as always) a mystery and then it’s time for us to leave.

11:30 am – At this point I realize that we all need lunch and we have two therapies that we have to leave for in an hour. It’s time for the therapist to go home and I decide to take a chance by bringing both the kids with me to Chick-fil-a to play for a few minutes and grab lunch before our next appointments.

12:00 pm – I arrive at Chick-fil-a with two very excited kids and only 30 minutes to eat lunch before we head out for our appointments. There are no parking spaces so I circle the parking lot for a few minutes dreading how crowded it’s going to be inside.

12:05 pm – I finally find a parking space, and get my daughter in her stroller. She can walk, but there is no way I am going to carry her and all our stuff and make sure my son doesn’t run in the parking lot. I get her out of the car first and then go around to get my son. We talk about how he is going to behave inside and he remembers my rule about holding onto the stroller while we walk inside.

I let my son go play in the indoor playground while I push the stroller over to order food. Thankfully it’s not as crowded as I thought it was going to be, and there is a table right near the playground so I can watch my son play while I eat.

12:10 – 12:20 pm – My daughter eats a chicken nugget and a half, a waffle fry, and then tries and spits out a piece of lettuce from my salad. I hand her my phone to play with so I can quickly finish my food.  My son goes back and forth between playing and coming to talk to me. He won’t eat food at Chick-fil-a, but he will drink their milk. I don’t worry about him not eating because he will be eating at feeding therapy in a little bit.

12:25 pm – My son tells me has to go potty. I look around at all our stuff and decide to just grab my daughter out of the highchair and leave everything else while I lead my son to the bathroom. Thankfully, he doesn’t need much help once inside, just prompting.

12:30 pm – I let my son know we only have a few minutes left and let my daughter run around in the playground area for a few minutes.

12:35 pm – It’s time to go and my son calmly comes and gets his shoes on while telling every child in there, “Good-bye! Good-bye friends! See you on the next morning!” I grimace on the inside as not a single child says good-bye back. They all stare at him like he’s an alien from another planet. I wonder what is wrong with these kids and I hope that my son doesn’t notice that no one is returning his friendly waves and “Good-byes.”

12:40 -12:45 pm – We’re in the car and on the way to therapy now. My son has feeding therapy and my daughter as occupational therapy. I look at the time and realize that we are running behind. I drive like a madwoman as I call the office to tell them we are going to be a few minutes late. Every minute counts when it comes to therapy and I hate being late.

1:00 pm – 1:55 –  We arrive only a few minutes late and my daughter’s therapist is the first to come get us. She brings Elizabeth to the room we’ve been working on while I go talk to my son’s therapist about his week and how he is doing. She works with him while I go back and watch my daughter in occupational therapy.

I am expected to be in each session of my kid’s therapy, but it’s hard to be in two places at once so I spend time learning from the occupational therapist, and then later head over to learn from my son’s feeding therapist. I am excited to see progress in both of my kids this week.

2:00 pm – My daughter and I head over to my son’s room and they play while the therapist and I talk about some therapy options and schedule changes. I remember that my son is still on the waiting list for several other therapies so we head out to the front desk to find out where we are on the lists.

2:10 pm – There is still no room for him in occupational therapy, but they were able to get him in for speech therapy which makes me very happy. At this point, I am exhausted. We’ve been out since 10:00 that morning and I am ready to go home. We make the long walk back to the car, and have a quiet ride home. The kids are just as tired as I am.

2:45 – 3:00 pm –  We make it home only for me to realize that I did not give my daughter her morning tube feeding. Now I’m feeling exhausted and defeated. She’s supposed to have 4 tube feedings per day and today she’s had none so far. I measure her food, pour it in, prime it, hook up her tube to the button on her stomach, plug it in, and go. It’s time for a diaper change and her nap and she sleeps while her tube feeding runs for about an hour.

3:05 pm – 4:00 pm – I finally get a chance to sit down and my son wants to cuddle. I put on a show for him on Netflix and settle in on the couch to cuddle with him while I get some more work done on my laptop.

4:05 pm – My daughter’s feeding pump is beeping over the monitor that it’s done. This also means that she’s awake now and done with her nap. I don’t feel like getting up, but I go stop the beeping, unplug her, and take her out of the crib.

4:10 pm – 5:00 pm –  I try to get a little more work done while the kids play with each other and with me. My husband texts me to say, “I love you” and that he will be home soon and I am glad that he will be home soon to help with the kids.

5:05 pm – 6:00 –  My husband gets home and sees how tired I am. He decides not to take a nap like he does on most days and instead goes and changes his clothes and plays with the kids.

6:05 pm – 6:45 pm –  It’s dinnertime and I realize I need to get up and get the kid’s dinners ready. They don’t eat the same foods as us due to their feeding disorders so I make three different “meals” for them and for us. We don’t eat dinner with them because we have to focus on feeding techniques that we are taught in their therapies, so we feed them first and we eat after they go to bed.

I get my daughter’s next tube feed ready to go. We are supposed to run it while she sits at the table and tries to eat. I desperately look for something that might be of interest for her to eat tonight. I set her up in the highchair with some cheerios, hook up her feed and work on my son’s dinner while my husband starts cleaning up the kitchen and washes the dishes.

I prepare three different foods for my son. His main “dish” is usually applesauce or yogurt. Then he gets two other foods that are in the small list of things he will eat. I put the food on his favorite separated plate and sit down to work on feeding him and my daughter.

Dinnertime is always stressful, my daughter wants to throw food, or mush it in her hair and my son doesn’t want to eat all. So commences the therapy techniques mixed with mommy’s techniques – anything to get my kids to eat.

6:50 pm – 7:05 pm – It’s time to put my daughter to bed, but my son is still working on his dinner. I grab her and put her to bed while my husband continues cleaning the kitchen and works on dinner with my son. I change her diaper, put her in a onesie so that she doesn’t pull out her feeding tube while she sleeps, and commence with the kisses and “night-nights.” I lay her down and say a quick goodnight prayer with her. I make sure her feeding tube line isn’t tangled, put on her white noise machine, and shut off the lights.

7:10 pm –  I grab my daughter’s monitor and head back to kitchen to continue working with my son on dinner. By this time, we are done and just want him to be finished eating. We tell him “two more bites” and then it’s time to get ready for bed.

7:15 pm – 7:30 pm – My husband heads downstairs with him to help hime get PJs and a pull-up on, and then reads him a bedtime story, while I start making dinner for my husband and I.

7:35 pm – 8:45 – My husband and I settle in front of the tv to watch one of our favorite shows while we eat. We take bites in-between watching tv, listening to my daughter jump around in her crib, and my son coming upstairs to tell us a million different things. Things like there is a fly in his room, he’s still hungry, and he lost a toy.

8:50 pm – 10:00 –  My husband heads to the guest room where his computer is for some video gaming and I settle in for a long night of working with clients, writing blog posts, and managing social media profiles.

10:05 pm – I realize it’s time for my daughter’s late-night tube feeding so I get up to get it ready. I turn on the tv and then go set up her feeding tube trying not to wake her up.

10:10 – 11:015 pm – I come back and watch one of my shows on tv while I continue working some more. Eventually her feeding tube is done and I run in her room to shut off the beeping. It wakes her up so I pick her up and rock her for a little bit before laying her back down and slipping quietly out the door.

11:20 pm – 11:55 pm – My husband comes and kisses me goodnight and heads to bed while I try and get more work done for a few more minutes.

12:00 am – 12:50 am – I close my laptop, clean up a little, and make sure everything is closed up for the night. I try not to wake up my husband as I slip into our room. I plug in my daughter’s monitor and hop in the shower. It’s the one time of the day I can be in peace and quiet without worrying about the kids.

12:55 am – 1:20 am – I take all my medicines and check a few things on my phone before trying to go to sleep. I say a prayer, and think about the day and how long it was. Just before I drift off to sleep I hope that tomorrow will be better.

Do you have a “Day in the Life” post? If so, link it up in the comments so I can read it!