Trauma

 Trauma Parenting.

A year and some ago, as I led a training for families interested in helping foster families within our church (no, we don’t foster, I just volunteer with this ministry), I heard the video once again say that kids who have experienced trauma have different needs than a child who has not experienced trauma may have.  They’re all “just kids” but there are certain things to think about when caring for or babysitting for a child who has come from a history of trauma.

It got my mind going, and I had to set that down to finish the training, but when I got home it all resurfaced.I wrote this out that night, and I only shared it with a small group of families like ours.  I came back across it and I think there are more than that small circle that need to hear about trauma.  About what it is like to be a family who has a child that has experienced trauma.

Trauma dictates how we go out.  It dictates what activities we decide to do and which we do not.  Trauma comes in to every decision making process we have in our home.  How we do birthdays, how we handle activities, how we attend events, how we attend church, how we… and so, I wrote it down. 

How parenting kids from a history of trauma affects our lives:
-dictates how we go out and when we need to stay home

-dictates what activities or events we do and which we pass on, and the entire ‘mood’ of the outing oftentimes

-affects how we handle discipline inside and outside of the home

-determines what birthday celebrations we have for those children, and how we handle birthdays for others, to some extent

-affects whether or not the affected kids can take part in extracurriculars, and of what types

-affects how we attend church, when we can attend church, and often times the entire experience while there when we attend

-affects every holiday celebration in our home

-affects how we have bedrooms set up

-affects how we handle company that comes by for a few minutes (seriously, even the UPS guy)

-affects how we handle company that are coming for several hours of time but only on occasion

-affects how we handle company that come for holidays or special occasions, especially for multiple days

-affects how we can interact with company that comes or plans to come on a fairly regular basis but doesn’t yet know the affected kids well
-affects how we wake up in the morning

-affects how we go to bed at night and what types of monitoring needs to be used between bed time and morning to keep everyone safe

-determines what level of “letting our guard down” is really possible in a day

-affects our eating schedule, making sure it doesn’t stray far enough to cause issues

-affects how much supervision we have to provide in which activities

-affects how we respond to specific behaviors that can cause escalation

-affects how we stand, talk, what tone we use, and what protective stances we have in place when escalation occurs

Trauma affects EVERY aspect of our lives.  We don’t just parent a child who has a history of trauma.  We learn how to live with the elements of trauma years later that continue to bring us to our knees and pray that Jesus heal their hearts and minds.

Trauma is life changing, physically brain altering, and it is not something that just “goes away” from love and supervision and consistency.  Trauma is hard.

Adoption is still worth it.

Flipping the coin- which is a bigger sacrifice?  To live with a child who triggers from trauma and sometimes goes right off the deep end with raging and things that seem crazy, or to know that that same child is living in filth and dysregulation and hunger across the world, unloved and lonely because we decided it wasn’t worth it to us to give up some of ourselves to help him or her?  Everybody deserves a family. Everybody has hope. Recovering from trauma isn't easy, but the process of recovery will never go anywhere if noone ever allows themselves to be affected in order to help another person heal. To my trauma kids: You are worthy.

To my trauma mommas and daddies: You are valued.

To those who support the families in the trenches: You are needed.

I think it is always good to remember that God is good, even in the hard stuff.

TEN years ago we became a family of TEN!

On Dec 02, 2010, we adopted Wesley in a court in Ukraine. A few days prior, on November 28, we adopted Aleksa at a different court in a different region of Ukraine! Just prior... We adopted James on September 1, 2010! He was in our home for just over 3 months before that as a foster placement with the intention of adoption.

When we look back at life in 2010 it was a WILD year. Lynae was born in September of 2009, so her year of infancy happened at the same time that God brought James to our family through foster care adoption. At the same time I was working (as a volunteer) with an adoption ministry running their Ukraine program and advocating for special needs adoption, as well as helping independent adoptive parents to complete their paperwork in a correct and timely manner. When Wesley came across our computers and a grant was given to him to find a family since he was in urgent need of adoption (he was already supposed to be transferred to an institution and had been sheltered for a time to keep him from transfer), we spent a week in prayer and then Mike said "that's us. Let's go."

What a busy year, a bit of a blur, really. I left for that trip a week and a half after Lynae turned a year old, and then went to adopt Wesley... and then Aleksa as well... about 6 weeks later. We missed our homecoming at Christmas and

Christine Harm

(she went with me for almost a month to help me bring the kids home!) and I ended up celebrating in Ukraine, then came home on December 30th with our new arrivals.

As I look back on 'memories' of today, exactly a year later, in 2011, I was traveling home from Bulgaria with

Shelley Bedford

when helping her bring her new daughter home! Although we have a child from Bulgaria, this trip with Shelley was my only experience traveling there since our son was already in the USA before he came into our lives. It was definitely a special trip and opportunity to see his country (which of course we didn't even know about him for 2.5 years after this trip), and to be able to do some missions outreach in Bulgaria as well. That was my last trip across the big pond! It's hard to believe it has been 9 years...

As a little fun side note, I found out on that Bulgaria trip that I was pregnant with Delaina, too . She is my only biological child that traveled to Eastern Europe! She was only big enough to make me sick enough to know I was pregnant withough needing a pregnancy test on our long flights home, though! Ha! When we traveled,

Rachel Davis

's husband and mother in law were with us for a leg of the journey, bringing their son Jordan home, and their mom kept telling me I must be pregnant. I was in some serious denial!

We have come a long way since picking up those two little ones in Ukraine in 2010. We've gone from a family of 10 to a family of 16, by adopting 2 more times and having 4 more biological kids. We moved from our "lifetime" home of central Florida to northern Georgia. Our lives have a whole lot more medical involvement now than they did before. We had ZERO g-tubes in early 2010, then James joined our family and eventually Wesley got a gtube, and now of course we have Nya with her gtube but also a trach, ventilator, and occasionally O2 needs. James also has home oxygen, and Wesley developed epilepsy almost 6 years ago now.

Just a little reminiscing Here's a throwback picture to December 2010 and a picture from October 2020 from Aleksa's 18th birthday!

In 2010 (above) we had Aleksa (8), Emma (7), Kristopher (6), Wesley (5), Brianna, James, and Micah (all 4), and Lynae (1)

In 2020 (above) we now have Aleksa (18), Emma (17), Kristopher (16), Wesley (15), Brianna, James, and Micah (all 14), Paul (12), Lynae (11), Delaina (8), Harper (5), Nya (4), Silas (2), and Ryleigh (9 mos)

The dish on disability and periods from moms

Four years ago I stepped WAY out of my comfort zone and opened up a conversation on my Facebook wall about disability and… PERIODS.  Female cycles.  YIKES!  I wanted to do a follow up, a “then and now” since at the time of the original post, I had only 1 teen female with disabilities in my home.  Now… I have THREE!  At the time of my original post, we had a conversation with 190 comments, so, I’m sharing the original post here as well as a summary of comments that were left so that we can continue the conversation! After the words from the experts, our family update on this subject is at the very end.

December 2, 2016:  https://www.facebook.com/meredith.cornish/posts/10210540852492682 (this will only be linkable if we are friends on Facebook)

Disability parenting means talking about things you do NOT want to talk about sometimes.  This is the case here.  Feel free to skip right on over this post if you are not a parent of a daughter with special needs or medical professional. 

Let’s talk about something that none of us want to talk about (ever) but some of us NEED to talk about.  Female monthly cycles… for our disabled daughters.

This has been a very (very very very very very very) difficult thing for us the last several months, and for my own sanity I have only asked for prayer as we handled it and talked to doctors (just to make an appointment thus far) and attempted to live through it.  I knew if I started writing I would say more than I should, so I asked for prayer and closed my mouth.  Right now, while I do not have a child with her cycle today, I can write about it a little better .

Let me start with the fine print.  I don’t like to discuss anything on social media that would embarrass my children, however because she has zero understanding and not a care in the world about any of it, and likely never will, I have decided to open up and ask for the sake of knowledge, understanding, education, and whatever else I can gain from other BTDT parents who would like to share all of that above good stuff with me. 

I am traumatized.  My daughter couldn’t care less about any of it.  I hate periods.  Mine, hers, anyone else’s I have to deal with… it just is so gross to me.  I can deal with all the other ‘medical’ stuff.  This is a 24 hour a day mess that takes away all of my daughter’s independence and keeps me literally following her to the bathroom every hour for several days and spending 15 minutes there with her. 

The rest of the time I have to keep an eye on where she is, what she’s sitting on, and keep a timer going to not go too long before dragging her back to the bathroom.  It is imprisoning right now.  For her because of her loss of independence, and for me because I can do NOTHING else, and go nowhere during that time.  Plus there's all the actual clean up that I'm doing every hour which is something I will not give direct imagery on for your sake.

There’s no way for me to deal with this in a public restroom with 10 other children (or ONE other child!  This isn’t truly a ‘large family’ issue).  Something’s got to give.  The crying, and nearly vomiting aren’t healthy (those are my symptoms of dealing with her periods.  She is completely fine with it all ).

We will be seeing the gynocologist on Monday to discuss options for her and I’d like to have a little more knowledge when we go.  I discussed this with him a little over a year ago before either of our oldest daughters started their cycles, so he was aware we would be coming and shared some very basic and general info with me at that time, however now’s the real deal. That was our "let's make a plan".  Now, well,  we’re sinking here.

I think this is an area where there’s a lot of silence, and not a whole lot of information.  I’m sure I’m not the only one sinking, and I’m also sure there are many of you who have gone before us and sunk and somehow figured it all out and gone on with life…   I know it will be 'worked out'.  I hope and pray that's true, anyway...

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The response from who *I* consider to be the experts!! (aka, moms of girls! These are from the comments of the original post. Names have all been omitted)

I gave some more information: We have been preparing, but that said, I was still completely unprepared. It has been worse than anything I had ever imagined it could be, and not only that, we had 4 or so ok ones to start which gave this false sense of "its gonna be ok" Then it has been two cycles of horrible horrible horrible, for 8 days and 3.5 between starts. Horrible. If someone told me what I would experience I'd have said- it can't be THAT bad. But it is.

One response to the use of pads: “Adhesive from pads + pubic hair = horrible experience....”

Many suggested depends (we were using a similar underwear type of diaper at the time), Thinx or other varieties of “period panties.”  Here was my reply at the time: “We have an issue with her removing a pad and diaper with her hand straight over the part that is dirty-- and squeezing it. I'm not sure this would have any more favorable results for us in that department with poor fine motor skills.”  Another mom said this: “We talked about a couple of resolutions and I've made an appointment but in the meantime, let me just say that Thinx underwear have made an extremely difficult and unpleasant time a little more bearable. Her issue is that if she doesn't have to wear protection she doesn't have her period. So she sneaks away and takes the pad out. They look like regular underwear and no pad is needed so for now, our issue is resolved.”  Another mom offered this: “We have Thinx, and they are no better than what you are dealing with when changing a pull-up. The difference is Thinx cannot handle HEAVY flow. (I have a daughter with heavy flow, and they can't handle it!)”

Several left comments like the following: “I know I've read many things on this (a while ago)...some controversial. From hormonal options (BCPs, Depo shots, etc) to implants/IUDs, to hysterectomies... I'm not sure where we will end up. My daughter is tough. On a good day. Soooo much trauma in her history.  I just can't imagine this will go well. At all…  If I'm being honest, she doesn't even wipe well. I.just.cant.imagine.”

A few brave souls shared their own experiences with other options: “Being on a hormonal supplement (like birth control) used to make my periods farther apart, much lighter and the emotional balance for me was much better too after a few months on. I believe you can get it packaged to make periods a few months apart instead of every month to maintain both health AND sanity.”  Another said “I have had an IUD for 7 years now and not had a period in that long...it's glorious and possible. The shot did not work for me and made me bleed for over a year...every day. So I'm telling you all this TMI to let you know that if one form doesn't work don't be discouraged and try another form.”  And a third: “Fyi..with the impanon(arm) alot of women myslef included bleed for months at a time. I was on it for over a yr with constant bleeding before i removed it. My doc. Said alot of women have that side affect. Constant or gone.”

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Another common response was “I’m listening” because their daughter was approaching puberty.  “This made me feel so much better. My daughter is still completely in diapers, no clue she's going or has gone. She will go on the stool then stand up and pee her way back to her room. I felt like she was the only one not trained!!! (My other child is completely trained with the exception of night time). I dread my daughter starting her period, it freaks me out, with my luck I will just get her trained and then we will have that!”  I could definitely relate!  “I have 3 trained and 3 not. One is 13 and doesn't have any idea. Another is 10 and has so many other issues, toileting is the last of our worries. The third is almost 9 and I think he will train soon. Every kid is so different.”

An adult friend with disabilities offered some personal advice: “It's more painful for us with physical disabilities and a little more complicated as far as 'supplies'. Birth control is a great idea. I was on it at her age just to regulate my cycle.”

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A few moms looked at this topic from a different angle- that of fertility: “Some will disagree with our approach but we have our daughter on birth control pills that limit her period to 1-2 very light days. She simply cannot handle a full blown period. And as sad as this is to say, she is in public school and not very boy who is nice to her has good intentions. She needs protection from boys who would convince her to let them abuse her and possibly get her pregnant.”  Another chimed in, “This has always been one of my big discussion points. We are not with our girls 24/7, and cannot trust that everyone around them have good intentions. A friend of mine used to do foster care and one of her foster children was born to a 22 yo mom who has Ds.”

And of course, I don’t have the only opinion on female cycles, so a few shared their differing perspectives, which I appreciate! “I've got three now that have periods. But it does not bother me nearly as much as it bothers you.”  They went on to say “All three girls are semi independent with it. One bleeds much more heavily than the other two, and wears a pull up diaper for a couple of days, but that's it.  Thinking of a bidet attachment for the toilet? I'm considering.”  Someone else shared: “I can't speak as the Mom of a special needs kid, so on that front I'm not super helpful. I can say that while you may be grossed out its a completely natural and normal process you, and her, body go through. People don't talk about it enough so it's become some sort of taboo gross thing, when it shouldn't be that way. From your perspective I certainly understand the dread and discomfort having to navigate that every month for someone who isn't able to deal with it independently. From an outside perspective, and this would have to be both a personal choice based on your personal beliefs and what's best for her per her doctor.”

Another option described was ablation:  “I'm definitely interested in hearing more about the ablation option. What would the negatives be? (I didn't have one, so I don't know a lot about it.)”  A personal perspective was shared: “I personally had an ablation done for myself due to heavy periods (as I approach menopause) -- it's fantastic, but I still have a little bleeding maybe about every 3 months for a handful of days. I'm guessing it's because I had some cysts and such that it had to go around, but it's not guaranteed to completely eliminate the period. In having it, you have to have permanent birth control as well - I had my tubes tied at the same time. My OB would not do it until we could guarantee that I would never get pregnant again.”  Someone else shared “A peds gyn told me that ablation isn't a good option at such a young age since the uterine lining can supposedly grow back after a few years.”  Another perspective: “Our doctor advises very strongly against ablation for kids with developmental disabilities, because they may not be as capable of telling you when they are having symptoms of potential cancer. And ablation can hide the cancer. Just a thought”

One mom shared a perspective about a conversation with her daughter with developmental disability: “we had a conversation about ablation, and the doctor told me that he felt very strongly that doing it chemically was much safer and it was not a risk he was willing to take. We really do need to see an OB/GYN though and get a more permanent plan because my daughter really wants to just be done with it all together. She also wants to have babies someday and although that is very unlikely, she would never agree to anything that would permanently take that option away at this time. She handles it pretty well but she does hate it.”

Another aspect of personal care was school!  “We are facing that with my daughter right now. We are still discussing with her doctors of what to do. I also have to add the girls go to public school and do not feel like their teachers should have to deal with this either. I'm really torn.”  A mom shared their response to the school issue: “We use the above mentioned pill and have three periods...... plan is either thanksgiving or christmas break/ spring break/ and a week in summer when it is supposed to rain the whole week.”

Other resources were given:  “There is a closed group on FB: Down syndrome and Puberty. It's not very active now, but maybe some post might help you. With your other daughters (and sons), I recommend the book "Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality, A Guide for Parents and Professionals."”

A birth control shot was discussed, and a common theme in replies was this: “We didn't do the shot bc if there are bad results, you're stuck for 90 days. Pills are easier to change and adjust since it's a once a day dosage.”

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Speaking of a regular pill, several stated it helped or didn’t help, and what type they used.  Here as one of the more unique replies but I’m sure there are more with this same outlook! “We have both our girls on "the pill"- from 7+ days of heavy to 2-3 light, and it has made a world of difference for cramps.. we choose not to go drastic because God made our bodies to function that way and who really knows if procreation is the ONLY reason it does.. was just our thoughts.”  A response to this (simply another perspective): “I'm not a fan of chemical birth control so in addition to not being familiar with it since I do not use it, I questioned where I stood as far as the moral dilemma I have myself with taking it (I understand that not everyone sees this as an issue, but it's something I was thinking through). I basically decided that it is not being used AS birth control- because sex is required to form a baby and there's none of that ever happening for either of my daughters so the aspects of hormonal birth control that I don't like are not something that even comes into play for either of my daughters.”

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The elephant in the room that many wondered about was brought up by a few: “A cousin of mine struggled with very very heavy periods. She has down syndrome and severe autism. She wasn't "bothered" per day by her period but she wasn't able to care for herself. My aunt tried birth control in both pill and shot form and nothing seemed to cease her cycles, or even slow them down any. After a couple of years and many many doctors they made the tough choice to have a partial hysterectomy. She kept her ovaries so she didn't go into hormonal menopause but lost her uterus.”  Another friend shared: “In situations like this I personally see no problem with her having a partial hysterectomy and having her uterus removed. Some people may think I'm horrible to say that. However you have to look at what she's suffering through as well. Just removing the uterus will cause the bleeding to stop because there will be nothing to bleed. Her ovaries still intact will cause her to go through her regular hormonal cycles and be healthier for her body.”  Many others said this is the direction they would choose for their daughters, if given the choice.  “We aren't there yet...but she's 12 1/2 so I'm hoping for a hysterectomy. I don't see why she needs a uterus, she's so severely delayed it isn't likely that she will ever surpass 3 years mentally, so she will never be able to consent sexually or even understand all of that. She can't wipe herself at almost 1e and only goes through the motions of washing hands not grasping fully cleaning them let alone cleansing her feminine region so a period sounds like literal hell. If the doctor won't do a partial hysterectomy hopefully he will do an ablation. My daughter would freak out and think she's dying if she had that much blood on her. I would think that would be more trauma than losing her uterus which she doesn't know exists, will not ever care about, and at a 18 month-3 year old cognition, I hope to goodness never uses.” “Partial hysterectomy would be what I would choose, If I had a daughter. No more messes and she gets to keep her ovaries/hormones.”  “I am so thankful you have brought this subject out here for so many to discuss. I have learned a lot just from reading the responses here and appreciate all the input. With that said, I have three girls with Ds that I am facing this very soon with and my decision is that I do not want any of them having a period at all so I would choose the hysterectomy. Now of course I realize that I need to get approval for this but this is the part that just chaps my behind. These are my daughters for whom I make all the decisions for and am held legally and morally responsible for in all aspects of her life except when some bureaucrat or doctor says otherwise?? Anyways, thank you to all for sharing your experiences and thoughts.”

The natural manager mom shared her experience: “I'm sorry you're going through this Meredith and I have no helpful words for you. My girls are both 15 and started a few years ago. They both had a hard time at first, and one chose to wear pull ups during her period each month. Now they both change their own pads-- so frequently that they each go through an entire pack each month. They do get moody and one gets crampy which is helped by advil, and we have no plans to use birth control.”  “My daughter is 16, had her period for at least 3 years now. Every once in a while we have a catastrophe, but she has learned how to take care of it. She is barely verbal, but between her OT, her hab worker and I we have come up with great solutions. It took a little bit of time. But she is independent with it. Probably the biggest problem is remembering to buy supplies. I forget.”  “My husband and I used to run group homes for Developmentally delayed adults. We had a variety of different disabilities, with a huge range of cognitive function, if they were potty trained, then they also dealt with their periods independently.”

And of course, there’s always these little jibes! LOL! “One more reason I only adopt boys!” Andall the girl moms replied: “Boys are gonna give us sexuality issues from a different direction! Lol”

And, those who aren’t in it, but read it to just be able to relate to people and understand: “Girl...I cannot even begin to imagine what you're going through. That is something I had never thought about u having to deal with.”

I’ll close out with the loving comments from those who just wanted to say thanks to ALL for their open dialog: “I just want to say "thank you" for posting this. You know that we're not in your shoes but our hearts know that it's a possibility someday. I'm thankful for friends like you who are open and honest. This gives good food for thought and a way to pray for those of you dealing with this currently. So, thanks!”   “Thank you for posting this. I'm learning a lot as we will be facing this MUCH sooner than I care to think about. Hugs!”  “I appreciate you being willing to talk about this. It's on my mind a lot lately. My daughter is developing but so far (thank God!) no period. Her ped said we had at least a year a few months ago. I'm planning to see how it goes first. She will wash herself in the shower but only after being reminded and I have to remind her to wipe after using the toilet - so, I don't know what it's gonna be like. It's been really helpful to read the ideas and tips in this post. Thanks!”

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You thought you made it to the end with that, right?  But, how about NOW?  Now where are we at with things, 4 years later??  We have not one, but three teen girls with disabilities.  I’ll give a quick update!  At nearly 2 years of terrible periods and multiple pill options tried, our oldest ended up with 40+ days of bleeding and the doctor finally said he was done if I was done, and it was considered medically necessary to do a partial hysterectomy.  We had been literally captive for the entire Christmas and New Year’s holidays and momma was losing my mind!  It took many months to get the surgery scheduled, but in the end she had her uterus removed!  I will add that we have had a recent instance with a mild period! Even with no uterus?? Yes…  Scary, isn’t it?? Well, the gynocologist had a few ideas for what caused it, and if it happens again we will have to see what is definitely going on there!  For my next two girls, so far we are at very light and manageable cycles.  With covid, the appointment I had scheduled in May ended up being canceled, and really we’ve managed ok.  I’m hoping to use the pill to regulate their cycles so we have some predictability.  Our biggest issue is that our toilet trained daughter sometimes just ignores the blood and goes on with life. Our other daughter is in a pull up all the time, so it is just a matter of us following her to the restroom to remove a soiled diaper without making a mess with it, then cleaning her up well at the end of her time in the restroom.

Life is never boring around here!  Please leave me an update or your own (kindly worded :D ) thoughts on the topic if you’d like!

Where did it go??

You know when you buy something for a specific purpose,  then you don't end up using it for that,  so it sits in one place for a long time? 

Weeks. 

Months. 

Then you get tired of seeing it sit there,  so you say "I'm going to put this somewhere else.  It's just in the way here."  And you move it.

Somewhere.   

Out of the way. 

Then,  you come up with another situation that it would work perfectly for.   

And. You.  Can. Not. Find. It. Anywhere. 

Welcome to our home.   Where did that remote power switch we bought for the Christmas light outside last year,  then never used for the light last year, so it sat in our foyer until June before being put... somewhere ... go????

What’s in your nativity?

We’re entering the Christmas season and as we deck the halls with lights and garland, we also take out the porcelain nativity scene and place it high on a shelf, away from all the fingers that will peel the creche apart at the seams.  Our family has also had a small “Little People” nativity set for many years, placed in the middle of the chaos of our own little people, ready for play and familiarity.  This year as we unboxed our Christmas decorations we found only a few pieces of the set.  I’m sure the rest of the pieces are together, somewhere, along with all of the Rudolph play set that is also missing.  We still left the stable up in the play area, and our kids quickly familiarized themselves with it again. 

I loved hearing Harper (5) tell Silas (2) that “that is where Jesus was born, and this (holding up the character) is Mary.  She’s been in my bedroom ALL YEAR!”  She went off to play, and I came back to the room a few minutes later.  This is the scene I found Silas playing out, complete with his thousand words an hour that he needs to get out.

Jesus has been located.  Not baby Jesus, mind you, but Jesus as an adult. 

Mary is praying on the roof top.  With Santa.  Maybe she’s helping him with his deliveries?

There are 2 dogs visiting the manger scene.  Silas loves dogs, so it only seems appropriate. 

I couldn’t get the scoop on Lightning McQueen and why he was in the manger, but really, that got me thinking.

As adults, what is in our own nativity?  When we build up the framework for our own Christmas story, what do we put inside the stable?  Is the Stable empty, only a few items left inside, unrelated to Christmas itself but more about our own interests?  Is Jesus on the outside, looking in, interacting with the fictitious idea of a gift giver from afar? (For what it’s worth, as a family we celebrate Jesus’s birthday with Santa bringing each child a gift as he, too, celebrates the Christ child!)  Has the baby been lost? Misplaced, maybe?  Are the wise men who seek him too far to be found?  Does our story of Christmas center around the Jesus-baby-turned-Jesus-adult and His sacrifice coming to the earth for our salvation?  

Today the play of my 2 year old challenged me to study my nativity.  

This Christmas I’m going to enjoy the Santa, adult Jesus, and Mary conversations on the rooftop of the stable told by my imaginative 2 year old, and I’m going to focus my own heart on the Jesus-baby turned Jesus-adult in my own nativity safe on the shelf where Silas can see it and copy it in his play, but where the story won’t be changed.  Jesus will stay at the center. 

(PS: I was able to purchase another kids’ nativity set on friday, so we can recover the story of Christ’s birth in our children’s play and learning as well.  Santa and adult-Jesus are, of course, invited to come visit as often as their appearance is brought about, though).

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.

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… :) 

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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!

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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! 

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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 :)

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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!

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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!

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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

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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. 

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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 :).

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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 :) 

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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!

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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. 

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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.  

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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! :) 

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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!  😬

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 ;)

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.

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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.