Wednesday, November 25, 2020

the stench of all stenches

How you know you've married well and you're in this together...

11:15pm, we finish playing a game because Tuesdays are self proclaimed "date night at home."  Mike goes upstairs and gets ready for bed.  I lay the baby down and then go up as he is coming down.  I feel the assault to my entire face as I walk up the stairs into a stench worse than a skunk.  I ask him if he checked kids up there, quiet whisper yelling down the stairs.   He said he thought maybe it originated with the kid at the bottom.   I change my clothes.  I catch a cricket that made it to our bathroom.  I come downstairs and look all over for him, then hear that the boys' bathroom is running water.  I go back up.  I open their bedroom door and all that is left of my sinuses shrivels and dies right there along with whatever week old roadkill is in that bedroom.  I go to the bathroom by sheer will power and memory because I think my eyes were burning.  It only gets worse. 

There is Michael with a 12 yr old kid getting sprayed down in the shower.  Oh my, the smell was awful.  He asked for paper towels and water.  I left the room very willingly and turned the fan on high in the bedroom.  Two other boys were somehow sound asleep in there.  I made a small sound to make sure they both wiggled a little and nobody had died from asphyxiation from the terrible fumes.  They both alerted.  I prayed they would sleep through this and tomorrow believe it was all just a bad dream. 

I left the room and went down stairs, trying to clear my nostrils of the lingering odor.  I grabbed a cup.  Someone had done that cruel and terrible thing where they stack 2 smaller cups inside a bigger cup in the cupboard, so little cups fell from the cabinet and bounced onto the barstool sitting below, then one fell to the ground.  Stealthy, Meredith, stealthy.  Remember you just put the baby down? The one who sleeps only 20 minutes at a time right now without touching you?  Oh, and I still had a cricket in my hand.   I met him out the front door. 

I grabbed paper towels and returned to the crime scene.  I then heard a noise.  I'm not sure now whether I actually heard it or whether it was some 6th sense thing because I'm pretty sure even my ears were occluded from the stench of a million dirty diapers.  I walked to the girls room and stood in their doorway a moment.  I heard it again.  "Emma, stop it," I said, as I talked to the black privacy tent she occupies.  She heard me and started babbling.  "NO, stop. Go to sleep," I said.  Then I took two steps into the bedroom.  After I was in the center of the room I heard a gasp and startled shriek and a child emerged over the trail of a nearby top bunk, sitting straight up and looking like she had just seen a ghost, saying "YOU SCARED ME!!" in a whisper scream.  I'm guessing she heard me but was unsure what she actually heard, but enough to open her eyes.  Then it felt to her like I was suddenly a stranger in the room.  I stayed with her a minute, calmed her and let her tell me about how Emma had opened her tent up a bit ago and had her head out looking around when this child went to the restroom.  She asked how Emma can get out of her bed now.  I explained that there are zippers in the inside, the same ones she uses to close it when she goes to bed, and she uses to open it in the mornings to leave.  The same zippers work at night too.  "Oh," and she laid back down. 

I bravely walked down the hallway to the bedroom where IT happened and pulled pajamas from the cubbies of the child who shall not be named in the hallway as I passed by.  I found Michael with his cell phone flashlight wiping the netting that surrounds the special needs bed.  Then I watched as he climbed out and went to the side of the bed and started wiping down the plastic on the pillow that we keep against the side of the bed to keep him from banging on the wall.  The amount of spray coverage that was achieved might hold a record.  I turned back to the child and opened the shirt up since he was having great difficulty finding the leg holes with his toes in the SHIRT I had handed him.  

He dressed with some efficiency as the 2 yr old began talking.  That kid has words.  100,000 words a day he needs to spend.  Not unlike his momma, who is writing this long post at 12:02am, I suppose.  Wrapped up in a blanket, somehow he didn't mind the stench in the room, but I guess maybe that's all part of the y chromosome.  

Bed wiped, child re-introduced to a clean space to sleep, and fan turned down to low, we exited the room of monstrous stenches from explosive diapers, me grabbing the bathroom trash as I went and Michael hitting go on the washing machine in the hallway. .  

Tonight Mike didn't call me to wash the head to toe pooped kid, not ask me to climb in the tented bed and wash the mattress.  He took it and did it and somehow soldiered through the aroma, asking only for the tools to clean with.

I dont need to dream up perfection somewhere.  There's really nothing more perfect than one who (**LOVINGLY**) willingly takes on hazardous waste at 11:15pm.  

And yes,  the trash made it all the way outside.  I'm sure somebody was wondering... ;) 

*note: the child pictured did not cause the fallout of November 2020.  It was his brother.

Saturday, November 21, 2020

q&a 2020

Are you ready for this??

Remember in early October when I said "ask me anything, and I'll do a Q&A post"?  Yeah, I didn't forget, but, I also didn't get around to it.  I had this idea I'd do a video reply.  Well, that hasn't happened.  Now I have a broken finger and typing is a little... difficult (I closed it in my car door a week ago, go figure). I’m at the point I’ve basically figured out 9 finger typing, so, are you ready for a LONG POST??  Here goes… :) 
from Amy: How do you do all that needs to be done? (and Rachel asked similar, but more specifically said "without losing yourself")
Well, "everything that needs to be done" means different things to different people!  I would venture to say that some people would walk into our home and see many, many things that need to be done.  Others would come up with ideas of things that need to be done that aren't visible.  Our version of what needs to be done starts with keeping everyone healthy and basic needs met.  Then it moves to emotional and physical needs and relationships, which is truly just as important but also not as easy to spot.  The house gets us on some level.  Keeping it tidy and clean is an effort we can all work towards.  Obviously there are other aspects, spiritual and other needs... We take it all in and day by day, week by week, we decide what needs us sooner and what needs us later.  I'm not sure this really answers the question, or whether Amy or Rachel were looking for specifics, but the long and short of it is, "we don't."  We do what we need to do, but we don't necessarily get everything that needs to be done, done.  Laundry or dishes sometimes wait.  The time between when the floor has been mopped or the fans dusted is likely longer than some might suggest it needs it at times.  Sometimes we order pizza instead of cooking on a busy day.  Sometimes we make choices that make things easier for us.  Not losing myself, hmm.  Well, this is who I am.  This is who God made me to be.  It is who I enjoy being.  I like a break and I need it sometimes, but this life doesn't make me lose myself.  It is me!
from Deena: Are more than the two youngest your biological children?
Yes!  We have 7 biological kids, 7 adopted kids.  We had 2 biological before began adopting, including one bio daughter with Down syndrome. We then adopted 2 kids (they became our oldest and youngest), then had a bio, then adopted our 6th that ended up being right in the middle.  Then adopted 2 more that same year that now were our new oldest and then right in the middle again.  We had another bio baby, adopted another in the middle again, had another bio, adopted one that became the youngest, then had the two bio babies you referenced! 
from Vee: How is Wesley doing? What grade is he in?
Wesley is generally doing well!  He struggles with uncontrolled epilepsy and his seizures haven't improved despite multiple medications.  We are looking at the next set of options for him now, to see if we can help him get a reprieve.  Wesley is 15 and in 10th grade, though since we homeschool, grades hold very little value around here :)
from Lyndi: is Kristopher towering over Michael in height now?
Not quite, though our family pictures make it seem so.  They're pretty close to the same height right now, but I doubt that will last for long!
from Rachel: Do you have any tricks to share?
Hmm... not really sure what kinds of tricks you're looking for.  Let's see... Pray often.  Forgive easily.  Don't sweat the small stuff.  Give mercy.  Trust God.  I guess that's all I got. :)  I'm sure that's not what you were looking for, but those are better than any other advise or tricks I can think of right now!
from Cynthia: I think you should write a book!
I would love to! In my spare time, of course :)  I love to share the journey God has put us on, and maybe one day when I'm not nursing babies I'll find a few spare minutes! LOL
from Nancy: How do you stay strong and rested?
I guess I'd say strong and rested are not really things I'd use to describe myself.  Strong in the spirit- from regular Bible study and prayer and time with God.  THAT I find a priority for.  Strong physically, I'm not always there.  Rested is not something I'd say is true about 99% of the time. It likely isn't true for any parent of medically complex kids, or for parents of infants or toddlers.  Or teens.  LOL :)   I do take some good vitamins, iron (I'm often anemic), and often high doses of vitamin c when we have sickness go through the house. 
from Susan: How do you afford to feed so many people? (related, from Alla: Do you cook food in advance?  Freeze?)
Well, we have slowly gone from 1 kid to 14 kids, and we've adjusted our lives accordingly as it happens.  We don't spend money on a lot of things others consider important, we don't’ have debt, and we prioritize spending with food being pretty high up the list :) .  I meal plan much of the time, so I know what I need to buy and shop from a list, without buying a lot of extras.  I shop during sales, buy in bulk, and look around to get the best deals I can on food.  We use Sam's Club (which our shopping pays for our membership and more), Amazon Subscribe and Save, WalMart pickup, and occasionally other places like Boxed that deliver and have bulk things.  I use credit cards to earn points, and redeem points like cash, but pay off the credit cards as we use them so there isn’t ever an additional charge for using it.  I cook meats in bulk often times, and freeze it once cooked, so it can be quickly defrosted and made into a quick and easy meal.  This reduces our need for quick and easy meals purchased from restaurants or fast food.  We have a pressure cooker that we LOVE!  Right now the USDA is providing breakfast and lunches to children and we have gotten those once a week for our kids who eat.  That has helped the budget during this unusual time, too :).
from Alla: How many hours do you sleep? When you are tired, are there things that help you rest and relax?
I go to bed between 11 and 12 most nights (occasionally later).  I get up about 4-6x during the night and wake around 7 most days, but I often don't go out of our bedroom until 8 or even a little after.  I wake and feed the baby and will sometimes fall back asleep with her for a few sometimes.  Michael goes to bed at the same time and sometimes gets up with kids as well. He gets up between 7 and 7:30 and gets his shower then helps our kids who need help in the morning to get their day started upstairs.  So technically, I could get 8 hours of sleep.  Very interrupted sleep...  :)  To rest or relax, I enjoy reading, or occasionally zoning out with the TV.  I find more than that, I enjoy finding a friend to talk to on the phone lets me process or just escape from whatever's in my here and now, and I find that relaxing, too.  Of course a good Bible study or prayer time are helpful, but if I do those while tired, I'll be sleeping instead :) 
from Cynthia: How did you manage to adopt multiple Ukrainian children without going into debt?
Well, we felt specifically called and equipped to jump in with both feet, and before our first adoption we had a significant savings.  We went all in.  We spent our savings, and we took a small loan from someone close to us.  We saved every penny and did some fundraising as well.  Within 3 months of coming home, we paid back the loan.  Adoption #2 was foster care, so there were very few expenses.  Adoptions #3-4 were again from Ukraine.  Someone had donated a significant grant towards one of our kids, which is truly the only reason we felt we could actually say yes to the adoption.  Finances are a huge part of international adoption.  We again fundraised some, and again took a small loan.  We then ended up with 2 kids instead of 1 when Aleksa was suddenly actually available, and we found that when God moves in the big ways that He did, others around us moved just as quickly.  We paid for both simultaneous separate adoptions and repaid the loan once again within 3 months.  God provided.  We didn't feel He was calling us to go into debt to adopt, and He provided our every need.  We made huge sacrifices, but nothing as big as not having a family!
from Mary: Can you share a bit about how you do chores? Thanks!

Each of our kids have daily chores that can take on daily chores! Anyone who is able takes care of putting their own clothes away and helps with laundry.  Three kids unload the dishwasher together. Two different kids help with round 1 and round 2 of dishes.  Our 16 yr old has extra chores that he helps with that he gets paid (monthly, a small amount) to do, because we have deemed them “above and beyond normal family stuff.”  He manages the 2 boys’ feeding pumps.  Fills the bags in the morning, starts and stops each one 3x during the day, and flushes the tubes after.  Things kids help with: the kitchen trash and recycling, feed the dog (and occasionally the guinea pigs), sweep the floor under the tables, clear and wipe down the table after meals, turn over laundry as needed and start the dryer, start the washer, make all the kids drinks for lunch and dinner (which is a huge help as I prepare meals!), take out small bits of trash (diaper sacks) during the day for us, set the table for meals with silverware, and serve food plates or bring serving dishes to the tables.  Everyone helps with care of the chickens, too.  One checks for eggs, one refills waters, one scoops food, and one keeps the floor from getting too soiled (yeah, she poop scoops!).  Right now, Kris or Mike puts up and takes down night coverings to protect the birds from the cold wind, too.  One of my kiddos with Down syndrome that has more significant delays puts new bags into every trash can as they’re emptied. Other things we may have the kids help with are breaking down cardboard boxes, stacking or moving around formula boxes (which even our most delayed can help with!) and other every-so-often chores.  Everyone cleans up after themselves and helps each other as needed, as well.  We very much have a “many hands make light the work” attitude with things, and our kids are really very willing to step in and help.  They also do well knowing what their responsibilities are and with that consistency, we know those things are being done. Things our kids do NOT do: change diapers, help each other in the restroom or with personal care of any kind, cook (with a few exceptions, and they will HELP us cook, but they do not prep meals beyond making sandwiches occasionally), give medications, provide any medical care (unless something minor is needed while a big kid is listening for siblings and we are temporarily unable, like suctioning or deflating the trach cuff while I’m in the shower, for instance), discipline their siblings, babysit beyond VERY occasional instances and maybe something like a shower, too. 
from Alla: Do you have someone that helps you with the children everyday?  If you need to see a doctor with 1 or more, how do you do it with the rest of your children?

Well, this answer has recently changed :) .  No, we do not have anyone that helps us with our kids.  In the past, Michael worked during the day and I was home.  I took care of our (then 13) kids on my own.  If I needed to go to a doctor’s appointment, I would hire a friend who has medical experience and experience with adoption, and she would either come to my house (with her son that is Lynae’s age) or meet me at the appointment and stay in the car with my kids during the appointment, depending on where I was going and how long it would be, as well as what her schedule was.  Sometimes, Michael would take off work and do the same, either watch the kids in the car, or come home and keep them, if our friend wasn’t available.  On occasion, my mom would come watch some of the kids, and others would either go with me, or sometimes even go to work with Michael.  Now, however, Michael is home and one of us simply takes the kid/s with appointments.  The baby comes along if I take them.  The other of us stays home with everyone else.  We aren’t really sure what this will look like in the future, but in a general sense, we have no intention to have in-home help with our kids besides Michael or I, our friend, or my mom.  
from Cynthia: How do you homeschool children with multiple special needs?  How do you handle organization in a household of 16?

Homeschooling looks different for our kids working on grade level than our kids with special needs.  In general our kids with special needs who are not on academic tracks are working on skills and knowledge bases.  We use videos, tablet activities, learning games, life experiences, “workbox” type activities, and worksheets to expose them to continued academics, work on daily skills, and work towards the goals that we’ve set for each one.  Some goals are as simple as being able to entertain and enjoy oneself.  Other goals are built to help them independently function or be as independent in an area of skill as they can be.  Learning is a 24/7 activity and not something they do between strict hours.  Those who can do academic learning but aren’t on grade level have worksheet packets and school assignments just like our kids on grade level, and both our kindergartener and kids who are working on similar levels sit with me to work a few days a week on those activities.  I use typical books (this year we focused on abeka and 180 days curriculum) and I adapt it and mark through what we’re not working on.  

Organizing the household, well, you asked for it! LOL!  For school everyone has a binder with 36 weeks of clear sheet protectors in it.  Worksheets are distributed into those and every Monday I go over the packet with each kid, then they come to me with any additional help they need, as they need it.  They keep it in a folder and work from that folder throughout the week.  They also have an agenda which I print out monthly, which has their book assignments and anything not in the binder written out for them.  These are all written out before we start school (or soon thereafter!) for the year.  We keep all the binders together, and the folders with them. Agendas I organize on Homeschool Planet online planner and print monthly or as needed when they lose them :) .  
We have ‘cubby’ systems throughout the house, and they’re our most significant organizational structural system.  We have them down our entry hallway for everything from games and toys and art supplies, to books and coloring and crafts, batteries, accessibility switches, glasses equipment, hair brushes and hairties, and we even have two of our kids’ dressers right in there with all of that (but you’d never know!) because they needed a place to be.  We use them for kids’ clothes upstairs; one area has 4 boys’ clothes, another area has 6 girls’ clothing.  We have them in the downstairs medical bedroom with medical supplies that we need to access regularly.  In the garage (which is an enclosed room… where our tables are, actually), there is a cubby for each kid’s shoes with their initial on it, and cubbies for hats, gloves, scarves, and another set with electronic gadgets like wii remotes and games. In our bedroom they hold ipads and chromebooks and laptops and one cubby has a bin where all the chargers go, another has mice and headphones.  That’s probably our single most used organizational device!  
As said above, about cubbies, we have family closet areas for most kids, with a few exceptions.  We also gave up on conventional ideas and decided to do what works!  That means the bookcase in the medical room also holds 2 pressure cookers, a blender, and silicone popcorn bowls for the microwave, because we use those things regularly and that keeps them close to the kitchen.  We have one Tervis cup for each child and they use it all day.  We have an amazing changing table my dad built for us with drawers that organize diapers and creams and wipes, but also paperwork and coloring books that are bigger than cubbies, etc.  We use space for what works, not necessarily for what its intended function might be!  
We have a whole wall of hooks for jackets in our garage room, a walk in pantry that was intended as a garage utility closet, and heavy coats are in a mobile wardrobe in the basement.  Medication has its own whole organizational system, but it is all stored locked up in a cabinet.  
We don’t have couches (we used to and they didn’t get used much!) and instead find our kids spend most of their time either working at a desk/table or on the floor playing.  We have a waterproof mattress on the floor in our family room for kids to flop down on and to do diapers/tube feeds for Nya on, and a very padded rug to play on as well.  Otherwise, the kids all use plastic or wooden chairs, because they can move them around to whatever they want to do.  We have several folding tables that pop up for a project or computer time or art or to sit by me and do school throughout the week.  We changed a few years ago to this portable and movable furniture and found it gives us a ton more flexibility!  We have a few upholstered chairs around as well, and our tables/chairs for dining are always up (and used by several for school). 
We have a toy box, cardboard books shelf, and then we have bookshelves that hold chapter books and bins with toys that are ‘sets’ of things.  The kids sort toys by bin to put them away (we are still working on this for some) and we rotate which toys are in use and put some away in the basement. 
This is such a broad question, I hope this was the type of thing you were looking for! :) 
Ok, I know it took me about 6 weeks to get these answers done, but if you have other questions or follow up q’s, feel free to ask!  We are a pretty open book, and I find I learn a lot from others when they post things like this, too! 

If you actually read to the end, you deserve a medal or something, but just to show you made it, post me your favorite emoji in the comments!  Here’s mine!  It feels very "2020" to me!  😬

Wednesday, November 11, 2020

5 steps to befriending a special needs parent

5 steps to befriending a special needs parent:

1. Consider how you’re friends with people who don’t have children with special needs.
2. Do that.
3. Realize that a lack of availability isn’t a direct correlation to a lack of desire, and keep trying when things don’t happen quickly.
4. Keep doing that.  
5. Maybe send caffeine and chocolate ;)

Thursday, November 05, 2020

restarting after covid 19 for your special needs participants

As activities resume, here is what your special needs friends and participants with medical conditions might benefit the most from: 

1: It is always ideal if accommodations can be made for them to join, however with the current health risks that may not be possible.  

2: Acknowledge that it is ok if they cannot join you yet.   This itself says you see them and they're not forgotten!

3: Recognize to them that they will be missed by not being there in person and that you understand why they cannot come.  

4: If there is any way to livestream, call in, or otherwise involve those who can't be there, make a specific invitation to include them. 

5: Take a moment to recognize just how hard this is for them.  If you are a person of faith, pray for them and their family.  As much as you've missed being in public activities during the quarantine, many people with special needs or medical conditions have been in their homes almost constantly since the beginning of the flu season (November 2019!), and many are being told by their physicians not to go out other than necessary until next spring (March 2021!).

6:Check back in.  Mark a calendar and don't let months go by without contacting them again to walk back through these things.  Maybe the situation will have changed and accommodations can be made.  Maybe just checking in will be what they needed to brighten their outlook on their own situation just a little bit.

These steps are simple things that, despite still not being able to attend, help us to know we are not forgotten.  Sadness is one thing.  Anger, bitterness, and depression are easily grown from isolation and loneliness, but can be helped by intentional effort by those who care about them.

I've tried to put words to how we are processing things right now, but none of them work out to actually portray what I want it to.  In short, while we are glad that covid-19 is posing less of a threat to the general population, the outlook for our family is still not as good because of the medical conditions within our home. 

We (our children especially) are watching things resume and there is a sadness in knowing that after many months of being home things are beginning to happen with the people and groups we want to engage with, but we cannot be a part of it still.  There's kindof an expectation around us that everyone will be excited to re-engage.  There is a sadness in not being able to return and a bit of feeling left out for those whose activities have left no options for them to engage other than in-person. 

I know very well it is not only us, so I hope the above considerations can help those in leadership of different organizations that are starting back up to retain their special needs families and participants with medical conditions, as well as to help the families and other participants to maintain their connections.

Sunday, November 01, 2020