As most stay-at-home moms probably do, I often get the question, "What do you do all day?" or as a cab driver in NYC asked me once, "Oh my gosh! No way you just don't work! Do you just watch T.V. all day long?" Yep. I watch my soaps and eat bonbons.
But seriously, I thought I would answer the question publicly. I think that staying home with children with high medical and developmental needs may even look different than staying home with typical children. If anyone is considering adopting a child internationally or through foster care and doesn’t already have a child with special needs, it may be helpful to paint a picture of our daily life.
I want to preface this rough schedule with the statement that everything we do is super intentional. We all want what's best for our kiddos! When your little one is struggling in life, there's quite a bit of extra research and time that goes into helping them be safe and successful. Everything we do with our kids has purpose - from the type of music we play in the background, to the reasons behind why we dry Ladybug's hair at night, to every single bit of food we offer the kids at mealtime. There's hundreds of hours of research and medical advice from countless specialists and therapists and nutritionists. We spend most of our evenings after the kids go to bed analyzing the day and our seizure log and finding patterns, figuring out what needs to shift, etc. So our daily schedule has been years in the making, shifting with the constantly changing medical and emotional needs of our children. I will explain our reasoning for some of what we do, but definitely not all of it! That would be the longest blog entry in the world. If you have any questions about what I don't explain, feel free to ask in the comment section. And I probably will accidentally omit some things that are important! So don't panic if I forget to say that we are always focusing on eye contact and language skills. Because we are! And so much more.
Mornings:
5:30 a.m. - the all important ME time! I use this time to do my bible study, pray, and drink some coffee. I also prepare Panda's bottle and some of Ladybug's breakfast, as she needs immediate food to bring her blood sugar up and help stabilize her morning seizures. It's a small, valuable window of time I to which I really look forward.
6:00 - the kids get up. I'm always present when Panda wakes to settle his fears about being abandoned and going hungry. The first thing he sees in the morning is me and a bottle! Ladybug gets up and does her morning routine. I head up to her room ASAP to administer her early dose of seizure meds, and then help her down the stairs as her balance is off in the mornings.
6:30-9:00-
- Breakfast - cook a high protein breakfast with Fiji water for the kids, and then beg Ladybug to eat/drink it!
- Clean up kitchen
- Bible study with the kiddos (something I'm trying to be better about as a regular part of our routine)
- Get everyone dressed and ready for the day - includes teaching Lady to how to pick out her clothes, take off jammies, put on her own shirt/pants, brushing everyone's teeth, and more medicines
- Ladybug swings and gets her hands and feet brushed for sensory/ speech activation (for a little more information on proprioceptive input, see here)
- Yoga - assuming there's time and no one has had a melt-down (eh hum, Panda) or a bad seizure day. This is where I sneak in PT for both kiddos!
9:00 - is usually when we head out for preschool, doctor or lab appointments, therapy appointments, etc. It is normal for our therapies and doctor appointments to take about 2-3 hours in the morning, although they can take up to most of the day. I'm going to go into the least amount of detail on this point, while it is by far the most draining and exhausting part of our day. It usually involves a lot of screaming, crying, frustration, anger, fear, and learning.
12:00- return home for lunch and nap. (Ladybug's seizure meds make her sleepy and a sleepy Bug is dangerous when it comes to seizures.) I have to hold Panda while he sleeps as naptime is especially scary for him. I get to use this time to listen to sermons or books on my headphones, which is really nice.
Afternoons:
*I really try to not schedule doctor or therapy appointments in the afternoon, as I want it to be time when we can relax and focus on therapy at home. I have found this to work best with mine and my kiddo's personalities.
2:30 - Kids are usually waking up.
- We take it slowly for Ladybug to regain balance and speech. It takes her about 20-30 minutes to be able to walk and talk the way she was pre-nap. Lots of falling and tears if we try to jump back into our day. I try to keep her in bed and read books or we all play something simple on the floor (something involving very little fine or gross motor skills.)
- Snacktime - for kids while I make medical phone calls (Gotta get that blood sugar back up!) I am always fighting insurance, chasing down labs and referrals, keeping logs of Ladybug's diet for her dietitian, and trying to get into the next specialist. I am also usually scrambling to work through our never-ending medical and adoption paperwork/bills.
- If cool enough weather and not rainy - play outside! The best PT I could ever ask for! Also amazing for Panda to get some vitamin D, as he's deficient. I sooo wish we could play outside every day! We work on specific skills or muscle building every day, disguised as play. (Panda has the personality where it's easy to do PT with him - with Ladybug we get a lot of resistance, so being very sneaking and incorporating it into our play is our best bet.)
- If rainy or too warm (above 85 degrees) - we stay inside and work on fine motor skills, our sensory diet, spatial reasoning, and reading (speech). This is a large, complex part of our day that involves lots of repetition and frustration. Therapy involves constantly pushing your kiddo beyond their limit, but not too far! We are always learning and growing, regretting and researching in this area. The activities come from therapists, books, classes, other parents, and interestingly enough Pinterest.
- I also sometimes let Ladybug watch a show or movie, all the while asking questions to help her follow the story. It’s a fun way to continue learning when she's had a difficult or draining day. Panda doesn't watch T.V., so he "helps" me fold laundry in the living room.
5:00 - I get dinner ready while the kids get to just play! Whew!
6:00 - The Duke generally comes home around six and we eat as a family. We are trying to be better about this as it gives Panda a concrete cue as to when to expect his Daddy and reduces his anxiety, but I'd be lying if I said it was an every night thing.
Evenings:
Play with Daddy! Lots of fun and laughing!
Bathtime, bedtime meds, brush teeth, stories, and bedtime. Our bedtimes are very strict as Ladybug's sleep schedule heavily affects seizures and Panda's routine is key to keeping him feeling safe.
After the kids go down:
The Duke and I spend most of our evenings trying to revise and build on our strengths and weaknesses from the previous day. We research, read books, and talk endlessly about how to help our kids thrive instead of just survive. We keep calendars, logs, and journals of medicine adjustments, seizures, all areas of development, sensory processing, sleeping habits, eating habits, etc. We brainstorm how to better handle that ornary receptionist at the specialist's office, or how we can better emotionally support one of the kids during their upcoming procedure. There isn't time for much decompression. It is an all-consuming job. It can be frustrating and emotionally draining, but there're a lot of celebrations for things that many parents never think twice about. (The very first time Ladybug jumped and landed with bent knees this past month - we seriously had a small party! She's a rock star.) Then I set up the next day's at-home therapy activities and prepare any paperwork for the next day's appointment and medical phone calls.
Nights:
I am so grateful to say that Ladybug's night seizures have all but disappeared! She wears a seizure watch at night that alerts us if she seizes for longer than 20 seconds, but it only detects the big ones. She also no longer suffers from insomnia, which is a funny and weird story. I have finally been able to sleep easier now that she's healthier than ever before! I still check the temperature upstairs at least once in the night to be sure it didn't suddenly become 4 degrees warmer (as our AC is wonky) which would trigger her heat seizures.
Panda is officially out of our bed... barely! We moved his bed downstairs to be adjacent to ours as we slowly transfer him toward his own room. He still has quite a few nightmares and panic moments, so we keep him close. I'd say on average he only wakes 2 times per night, and he is usually quick to sooth. We have fairly peaceful nights, and I assure you we don't take it for granted!
We also have two kids that have missed so much of just life! One spent the first three years of his life in an orphanage, experiencing little beyond his own crib, and the other spent the first 2 1/2 years of her life in hospitals and doctor offices, once again experiencing very little beyond the car trips to and from and getting blood drawn for the millionth time. That being said, we also try to be very intentional about taking days off to just experience life! Go to the county fair, zoo, museum, a baseball game, a play, a ballet. Play in the rain, in the leaves, at the beach, in rocks. Feeding the ducks, petting dogs, running up and down hills. There's just so much catching up to do. Without schema (background knowledge) it's impossible to build vocabulary or understand stories. It puts any child at a disadvantage! So when we aren't knee-deep in medical appointments, we really try to add in valuable life experiences that our kiddos have missed out on.
I love our little family of four! I am happy to take on the challenges that our children face on a daily basis and do everything I can for them. It has been a major shift from teaching elementary school, but I'm also blessed to have had a vocation that had so much early childhood development education. I love that God took us down the path of adoption, including all its trials and miracles. To be honest, it isn't easy. But easy is boring. Easy is usually outside of God's plan for our lives. He equips us with exactly what we need for the situations to which He calls us.
If you are adopting internationally or through the foster care system, your upcoming change of lifestyle is something to keep in mind. You really are fighting daily for your baby; whether it's holding her down screaming for medical procedures, arguing on the phone with insurance, or teaching her for the 100th time how to use her thumbs to put on a sock, you will be fighting the good fight. It's stressful, humbling, beautiful, heart-breaking, sweetly rewarding and bitterly exhausting.
The foundation that has already been laid is Jesus Christ, and no one can lay down any other foundation. But if people build on that foundation using gold, silver, jewels, wood, grass, or straw, their work will be clearly seen, because the Day of Judgement will make it visible. That Day will appear with fire, and the fire will test everyone's work to show what sort of work it was.
(1 Corinthians 2:11-14)
It's funny because Ladybug and I have been working on comprehension with the story of the Three Little Pigs, which seems to parallel a little bit with this verse from Corinthians I have recently been studying. I have found it very convicting to my mindset and priorities. A large part of my work for the Lord at this point in my life is my children. I know that one day I will be standing before my Creator answering for how I chose to build on the foundation with which He provided me. I hope that I can say I used gold and precious stone and not grass and straw.
For those interested, here's some of our favorite resources that we have found to be helpful:
1.
The Connected Child by Dr. Karyn Purvis
A must read for
anyone adopting! Or really anyone...as I was reading it, I found myself wishing I had read it before we had Ladybug.
Website with more info
here. If you have a friend who has adopted, they will likely have a copy to loan you!
2.
The Write Start by Jennifer Hallissy
How to support your kiddo's fine motor skills as a parent (besides the OT homework)
Buy
here.
3.
The Out of Sync Child by Carol Stock Kranowitz
For kiddos who struggle with sensory issues. There's multiple spin-off books that also help with activities to work on at home, but I found between our occupational therapist, this book, and pinterest, I was set.
I bought it
here.
4.
Everything a Child Should Know about God by Kenneth N. Taylor
Great book for reading with younger children (3-6) or older children who are still working on their comprehension skills (English language learners or developmentally behind)
It contains short, simple sentences of explanations followed by a direct follow up question to help you track if they're understanding. Each page also has a picture to assist with the concept. Biblically sound
You can buy it from multiple places, including
Amazon.
5. I would highly recommend finding a support group - whether it is an adoption group or a group that is more specific to your child's special needs. I have found invaluable information from other parents going through similar situations that no doctor, book, or therapist could ever provide! (ie. Fiji water helping with speech and seizures.)
6. I would also recommend researching how to teach English Language Learners if you're adopting internationally. I was fortunate enough to already have a certification in this area from my teaching days and have found it incredibly helpful! I don't have any recommend resources, but if you've found one, please share!
7. Evernote app - For organizing medical paperwork and bills!!! At some point in February you begin to drown in paperwork and trying to keep up with how much you've paid. A friend recommended this to me and it's my first year to still tread water with it all! Seriously a life-saver.
If anyone else has any suggestions for what has assisted them in their journey, I'd love for you to share in the comments! Websites, articles, seminars, books, apps - all welcome!
***Updated note: This schedule is just that - a schedule! It has that peaceful, smooth undertone of a schedule. Remember that there is human element to it and there are lots of complications during each part of our day, whether it's fits, dirty diapers, or coaxing Ladybug to eat when her seizure medicine steals her appetite. I know it's easy to look at someone's schedule and think they have it all together! We don't. =) No one does!
