Week 12: Christmas with Grace

Quite honestly, I am not sure how to think about Christmas. I will start with the great parts. Grace got to come home so we were all together after 3 months. That was very special. It was JR's first Christmas!! It was so funny to see his very mellow and laid back self just take in all of the chaos and not really bat an eye. Although, their family had 4 Christmas' in 6 days and 3 of those days were staying at the other grandparents house so he was clingy, clingy, clingy to his mama. But compared to any other "normal" kid? Still incredibly laid back:) Bella? Wow, she is a spitfire just like her mama was! Always moving and wondering and finding joy. There are few things in this world that really truly warm my heart, but seeing how our daughter parents her babies? How they respond shows they are so loved, doted on, and heard. They know they are safe. I don't get to see kids like that very often. Such a blessing!!

On to the harder side of the day...
The week before Grace came home we were preparing plans and hearts with realistic expectations. She came home and...it was hard. On Christmas Eve we enjoyed a trip to a neighboring town in our new to us that day van to look at Christmas lights. Having everyone together was good...but we all seemed to fall back into old patterns of interaction. Perhaps out of anxiety? Unknowns?

Christmas day we woke early and got to Julotta at 7 a.m. We then enjoyed talking with friends before coming home and having a special breakfast then opening gifts. Our Christmas dinner was delicious as usual. But there was a lot of tension. Grace really had a hard time with being at church and worrying how people were thinking about her. She kept saying she wished that no one knew why she was gone or where she was.

I had a migraine starting on Christmas Eve and by Christmas morning after gifts I was not in a good place so laid down. Thankfully I fell asleep quickly and when I woke 20 minutes later it was much better (and hasn't returned since then - I am so grateful!!).

In the afternoon she had an emotional meltdown that used to turn really ugly but she handled incredibly well. I am so proud of her for the skills she is learning and the tools she is choosing to use. I spent time with her and she used her words better than she ever has to describe her fears and anxieties and what set her off. Some of it was her wanting to come home now and not go to the group home, which we completely understand. And part of it was how she responds to me specifically.

That is what I have been mulling over for the past two days. I am not sure what my final thoughts are on that...

Anyway, my husband drove her back Christmas night. She had a good day Thursday, but a pretty bad day Friday. That was a good reminder to us that she really does need to go to the group home and is not ready to be home.

But how she did at home also was a blatant reminder that we still have a lot of healing to do here at home. We all have talked about what we think/feel about the visit and I think Buddy summed it up the best. Faith was extremely tense with Grace home. Her responses got JJ upset and worked up. All of their tension got me more tense than I already was. It was just a pretty...tense...visit.

But...she really was soooo much better than she was before.

So? What does that mean needs to happen next? With the family? I don't know. With the next 1+ weeks?

I don't know that either lol! I am on a much needed vacation (stay-cation) until January 6. That is 12 days without having to go to work (and my 2nd week of the year I have taken off). So, yesterday was my first day home (not counting Christmas day) and I made a long to-do list. Buddy informed me that I don't seem to know what vacation is because I kept working (gotta love being self employed lol!). I informed him that adulting means that there is always work to be done!!! I had 10 items that needed to be done Thursday and got 9 done (I put off writing the blog because I wasn't sure what I wanted to say). Then I told myself that I would just keep writing the to do list as things come to mind but would intentionally not work for a couple of days. So, even after I completed the 9 tasks Thursday including paperwork, getting insurance for our new van, and baking - I put together a 750 piece puzzle with some help from Faith and JJ. Friday I decided to do no work and started a 1000 piece puzzle. It is not even 25% done - this one might take me a few days lol!

Bottom line? I do not think I am made to do nothing:) I am still waking up between 6 and 7 to do my hour long work out. But then after I make a big breakfast I sit in the hot tub. Today we get to watch the grand kids for a few hours! I am excited about that:)

My pain levels topped out Sunday and have dropped significantly. I am now back to about where I was before - aware of it all of the time, forcing me to modify my actions/posture/etc but not stopping me from doing what I need to do. I can live with that:)

On a lighter note - the "big" gifts that we got the kids this year were fitbits. We are trying to promote healthier activity with them so are challenging them each to compete with each other for steps in a day. I got myself an iwatch a month ago that also tracks my steps, and even with my pretty sedentary job I always hit 10,000 steps a day so we thought we would get them fitbits and encourage them to have a little more understanding of how much they sit around. And I banned electronics from noon - 6 while home on vacation. Lets just say that legos and basketball are getting done more frequently now:)

Oh, and we got a Dribble Up basketball for the boys. It is really neat and I am glad it is as interesting as I hoped it would be. There is a daily basketball skill to learn ball handling and control better and charts their progress. It is pretty impressive and I hope it helps them develop the skills they need to play basketball they way they want to on the court.

Christmas day we all had a discussion during our meal of ways we saw Jesus in our lives this year. Most of our discussion was about how God moved all kinds of circumstances so that we could get help for Grace that she needs and how much we see Him working in her life. Even when situations are tense and not exactly how we would want them to be, it is still so evident that His fingerprints are all over our life.  So thankful for His Sovereignty, His Power, His Grace, His Forgiveness, and His Sacrifice!

Week 11: She was approved!

Grace was approved for the residential group home program:) She will transition from the psychiatric facility in a couple of weeks and then be in the 9-12+ month program. We got to have another few hour visit and she did well. Unfortunately she had a really bad day this weekend with a lot of consequences. She is supposed to come home Christmas Eve and Christmas day (a little over 24 hours) and we hope her choices this weekend don't prevent the visit. We are all nervous about the visit and have spent a lot of time in our family therapy sessions talking through expectations, so we are praying that she does well.

My husband and I have been looking at getting another van for over a year. We have identified a van that we want, and someone to work with (the same company we bought our current van from). It is such a difficult decision to make - we need a new van but it is so expensive. Just one more time and money consuming issue to address lol!

I have been working a lot of hours. The past few months have resulted in a lot more hours per week worked. It means my husband is having to handle more and I am not home much at all. I was thinking about it this week wondering why it was happening and then God reminded me "you have been praying for provision every night." Ah ha! So now I am praying "thank you for your provision" instead of asking for more lol! No, in all seriousness it is all good. I am sad so many people are hurting but I am so thankful that I can possibly be a part of helping them heal.  It has been adjustment at home though.

I have been having some health issues for awhile. We have gone back and forth on how to deal with it the best, most realistic, way. There are so many opinions it is hard to know who to trust. That usually results in me just doing nothing. But, I finally went to see a nurse practitioner who specializes in natural treatments. It was very eye opening. As I sat in there listening to her like she was speaking a foreign language I was wondering how many people come in to my office and while I think I am speaking completely logically they are not tracking with me either!!! Thankfully she wrote down an ENTIRE SHEET of changes I am to make.

One problem I am really struggling with is sleep. About a month ago I started taking a CBD oil at bedtime that I had tried in the past but didn't find helpful. This time I found that I started getting somewhat better sleep. But then I ran out. I had also started a new exercise program at that time and had discovered that my back pain was significantly reduced. I thought it was due to the exercise program. However, after I ran out of the CBD oil the pain came back right away. I bought more and enjoyed over 2 weeks of practically no back pain, and improved sleep! But then I started to get migraines and my head felt really foggy. I happened to get in with the nurse practitioner last Thursday and she gave me a list of things that she thinks is wrong with me. She did a great job of explaining everything (I took my blood work from the past 6 years and she showed me the patterns) even though it was like she was speaking Greek it made enough sense to me that I thought I would give her suggestions a try. And I did more blood work specifically targeting what she thinks may be going on. However, she thinks that because of those problems the CBD oil is not a good fit for me and asked me to try a different option and stop the CBD oil for 2 weeks to just try it out.

Well, today I have really wondered what is worse - back pain or a migraine/foggy brain.  Ugg. I am determined to get through the 2 weeks but it is really going to decrease my productivity and plans over Christmas break. I guess it will ensure I actually rest lol!

I am planning 12 days off due to how Christmas falls in the week. I am really REALLY looking forward to it. I went on a slow walk with the kids this afternoon and we talked about what we want the break to look like, what we want to get done, etc. We are hoping for a lot of down time (aside from paperwork, getting Buddy applied for colleges to finish his BA, etc) but I am most excited to be planning our Alaskan cruise for this summer. We have always hoped to get to do this cruise to celebrate our 25th anniversary and I think, now that we know that Grace will still be gone, that we can leave for a week and it will be ok. We are so thankful for Beautiful who will hold down the fort. We plan to go while 2 kids are at a church event for a week and another kid will be at camp. Now that the kids are taken care of we can plan the fun parts:)

Week 9 & 10: Firsts

A couple of weeks of sweet firsts:)

First time we got to take Grace out of the facility! We went out for lunch and her Christmas shopping for her siblings. It went well:)

First time Faith told me about a school event and asked me to participate in it with her!!!!!!!

First time Superman started in a basketball game - and he did amazing!!!!!! He had a play that was just amazing! Did I mention that he is, and played, amazing? :)

First basketball game for JJ. He played 3 games on Saturday in a tournament. They played against older kids so lost by a lot all 3 times, but he got out there in front of a crowd and seemed to know more or less what he was doing (for a first year basketball player. He sure knows more about it than I do lol!!).

First time that my emotions have been present for so many years. I cry pretty easily now - not in sadness or depression but just in feeling. It is so utterly unusual for me. I cried like crazy during a commercial during a football game last weekend. My family all looked at me like I was losing it as I was trying to describe what was going on. Uff da.

First time that Faith came to me at night saying she was afraid. It was clear that she was very afraid. I did 5 minutes of EMDR with her, she calmed down, hugged me (HUGGED ME!!!!), and she went to sleep. In the morning she said she slept well, and she thanked me again for helping her the previous night. I told her that I was so glad that she asked for help!

The first time that I had my Christmas cards out the first week of December!

First time that Faith had an angry time and bounced back from it without the grudge toward us lasting days or weeks. The same day she was back to normal. :)

The first time I got almost all of our Christmas shopping done by online Black Friday shopping lol! Boxes kept coming and coming all week and my husband keeps giving me grief. After all he is the "get up at 4 and Black Friday shop in person" guy lol! But, shopping is done. Yay!  AND the gifts are mostly fun gifts - not practical things like clothes like I usually do - Yay Yay!

First time I attended our church Christmas Tea. I hosted a table (Beautiful decorated it gorgeous!!), didn't spill hot tea on anyone, and had a good time! Faith came with me and swapped her tea with me because she didn't like what she chose;) I think that maybe we will experiment with some teas:)

It has been a good couple of weeks. We are thankful for the progress we are seeing in Grace and all of the kids. We are praying that Grace is accepted into the long term group home and that can sustain there. She needs time to make the skills she is learning into habit.

Thanks for your prayers for our family. God is good. Always. But right now there is a sweetness in the feeling of healing instead of the helplessness and hopelessness of waiting for it:)

Week 8: Thankful

Wednesday was 8 weeks since Grace went to the treatment facility. They requested another 30 days minimum, and next week they will be putting in the application for the long term group home. I am not sure when we will hear if she is accepted to that or not.

This week I focused that I am thankful:
for the facility and their staff, and what they are teaching Grace.
for the insurance company paying for her stay.
that she is learning strategies and is using them more often.
that the therapist is taking our concerns seriously and addressing them.
that she is being considered for the long term program so she can have the time she needs to make the changes in to habit.

I am thankful for:
my grandkids having a mother who stays home with them and has taught them that they are loved and can trust their parents. I know the pain of having kids who don't trust their parents and the negative ripple effects. What a blessing it is to see them trust. Do not take the trust of a child for granted!
getting to see my grandkids very often!!!
the blessing of my first born and her husband. They are working hard on being intentional about marriage and parenting. So grateful for that:)

I am thankful for:
a husband who is my rock. 27 years ago we met and were not believers. Yet, God has shown us infinite grace and allowed us to be sanctified together and become more unified so that we can navigate this adventure of our life together. I know that is a rare blessing. I am so thankful for him!

I am thankful for:
Snow Days!!!  So far we have had 4 days together all.day.long. Two more to go! The first 3 days were great! Today...has had moments when I am thankful that I work outside of the home lol!!!!!
I am finally relaxing. I badly needed the time off and it has been a blessing to me. I would not have taken the time for myself so I am glad I did not have to make that decision:) This morning I actually slept until 8:15!!!!  To be able to rest and not wake at 5 or 6 with my mind racing with "gotta get this done!!!!" was sweet!
Grace handling with maturity the major disappointment of us not being able to make it to her Team Meeting and first outing outside of the facility in 2 months. Hopefully we will be able to make it on Friday!

I am thankful for:
our other kids. We have been cooped up together for days and are having fun together making food, putting up the tree, celebrating Thanksgiving together, playing games... having quiet time;)  Yesterday at our Thanksgiving meal we had such sweet time of prayer. Everyone prayed and it was so precious to see what was on their hearts. It gave me hope. It also made me cry - I am thankful that my heart is softening enough to allow the tears. I have been numb and cynical for so long. It feels good to...feel:)

I am thankful for:
online shopping lol!!!!! My husband did the black friday experience in person while I enjoyed getting almost all of my Christmas shopping done online this week!

I am thankful for:
God. His timing, power, sovereignty, plan, grace, forgiveness, sacrifice, and example. I am so thankful that I can trust Him!

Week 7: prayer requests - Still moving in a good direction!

More good news:)

Grace has not had any more major incidents. That means that today she requested that next Wednesday she will be allowed off campus with us to go to lunch. The psychiatrist approved that 1-2 hour lunch visit based on her improved behavior. She is VERY excited about that. If she has any more incidents, she won't be able to come with us so I hope she can make good choices until then. 

Next Wednesday we have another Team Meeting regarding her progress/needs and the therapist will be requesting of the insurance company for another 30 day extension. Insurance is an interesting dance of determining "medical necessity." She is not behaviorally ready to leave the facility so we are praying she will get the 30 day extension. With that said she needs to be doing well enough for the long term group home to approve her to that step-down program. Thankfully the residential program is self-pay and based on our income so we can afford it and not have to keep getting insurance approvals.

The biggest problem that I see at this time is that she really REALLY has a problem with thinking "it's not fair." That is a major trigger for most of her behaviors. She 1) often misinterprets information and therefore thinks it isn't fair when it is and 2) needs to live with the fact that life ISN'T fair lol!

So...please pray that she:

1) has no more incidents and is internalizing the skills that she is being taught. Not just behavioral compliance but that her thinking becomes more appropriate.

2) gets approved for another 30 days at the facility, and 

3) gets approved for the long term group home (12+ months)

Additionally, Faith is...struggling. Please pray for her to have genuine heart change as well and that she would actually use her words to express her needs.

Thanks for caring about our family and praying for us:)

Week 6: most things are moving in the right direction!

I contemplated not writing this week as it has been yet another "complicated" week. I need to keep myself accountable to this process even if I would rather only post about results.

A lot of this week went well. Friday we went to see Grace. We had an hour of family therapy, then an hour visit. We are moving forward with the plan to have Grace transition to the long term group home after she is discharged from the psych hospital. I refuse to consider that she will not be accepted. Please pray for that outcome. It would be the best outcome for all involved. She did have a bad Monday doing something there for the first time that she had only done at home before. Clearly, even after being there for 6 weeks, she is still having very concerning behaviors. With that said, she is showing that she is trying, and transitioning to the long term group home would give her a long time to cement those skills she is learning. 

On the home front we have had some ups and some big downs. JJ has had more nights he is sleeping through the night. Superman is doing better with his responsibilities. Buddy has decided on a direction to pursue regarding where to obtain his BS in Computer Science. Faith and I had some lovely times together. Saturday was absolutely precious with her. Then Sunday came... Uggg.   She is a very tough kid. After 11 years of living with her I can confidently say that I do not know her. So when something particularly bad happened Sunday we are left wondering how to proceed. I can't make sense of it, don't know what to do, and really would appreciate your prayers for wisdom, direction, and her heart change. We are considering putting in an application to the group home for her as well...

Other positives: I actually want to do things. I feel like I am mostly feeling like I did back before the realities of the last decade. Like the woman who got a bachelors and doctorate degree in 7 years. I sleep about 6 hours at night and can't sleep any longer (it doesn't help that I rarely get to bed before midnight. But when I do get in bed by 11 I wake up at 5 lol!) - the moment I wake my mind swirls with my "to do" list and I cannot fall back to sleep. That is an improvement over waking up being consumed with anxiety about our home returning to the tension it used to have. I have also realized that I do not dread leaving my room in the morning knowing what I would face. I am realizing that I used to sleep more in the morning just to avoid tough issues in my life/home. So now I am excited to get up and get things done. It is such freedom !!  I am working crazy busy hours on top of the home projects. I am doing so much more and find that I am not in what had become my "normal" of retreating or shielding myself from others by hiding away, reading a book, and being in constant pursuit of mental escape. My body isn't hurting like it was. I feel hope again. My mind feels clear and able to concentrate and remember things. I went in for my every 3 week massage today and she told me that I was in MUCH better shape than I was 3 weeks ago. Yay! AND my blood pressure 2 months ago was at an all time high. I had never had high blood pressure in my life! Now it is back down to my normal levels:) 

I know I need to slow down work though. My husband is needing me at home more. I am tired after my 13 and 15 hour days and not available to help him. Tuesday, for the first time in my life, I wished that I was a coffee drinker as I really needed some caffeine. AND when I got home from work and my husband had to tell me about what had happened that day I told him, for the first time, that I didn't care and don't even tell me. Every other day I really try to listen to how his day has gone and the crazy stuff he has to deal with...but that day it was not happening. 

Today was my day off. It started at 6 a.m. when JJ crawled into bed waking me up so I couldn't sleep anymore. So I got up and did my work out (that I try to do 5 mornings a week - it helps my pain levels). Then I tried to clean up the kitchen from what the kids did not do last night, showered, and went to my 9 a.m. massage. Then I saw 2 clients that I couldn't fit in the rest of the week, came home for 25 minutes. During that time I did some fast cleaning and rushed over to see Bella since it is her 2nd birthday today!!!! yay!!!! I took her some treats and was out the door in under 5 minutes. Then we rushed to the school where we had a fun meeting with the principal... After that we got home and I finished up 3 psych evals. I then got back in the car to go get the kids from school. I finished up more paperwork at the table while supervising the kids actually doing their homework, telling myself I was done doing things for the day. Then I remembered I had to scan some papers in and send them off. Then I saw the fleece fabric for Bella's birthday blanket and remembered I was supposed to have it done for her birthday party - tomorrow! I got two little blankets sewed up for her, got Faith started making grilled cheese for supper, and drove JJ to basketball practice. I came back and told my husband I was done for the night and was going to put my feet up and asked him to get JJ after practice (rifle season starts on Saturday. My husband is spending every spare moment trying to build shelves in the garage, after ripping out the cabinets, so he can actually make room to get the deer in the garage lol!). But did I actually put my feet up? of course not lol! Then I remembered that I really need to stay accountable and keep up with writing this. I can easily get lazy and stay task oriented without stopping to assess how I am doing because I am too focused on what I am doing. The last task I need to get done tonight is to write my grandmother a card. Her birthday was the 5th...sigh... I wanted to send her pictures with the card but didn't get them picked up until today. So...

Birthday card to Grandma. Then done. No more. Done for the night. maybe... 

Week 5: A Roller coaster Week

JJ woke us up this morning at 5:30. He is still not sleeping well. At least it wasn't 2:30 like 2 days ago:) Despite the fact that I didn't get to sleep until after midnight last night, I could not fall back asleep as I kept replaying this week in my mind so thought I would just get up and write the thoughts swirling in my mind.

I had a long post written out already on my thoughts about RAD but today my thoughts are focused elsewhere.

Last Thursday I spent the day talking with 3 different friends and my husband (all separately). I talked through my thoughts and feelings. I thought through why my body keeps screaming at me that I am not as well as I want to think that I am doing. Through all of that talking and sifting through thoughts I came to the conclusion that, at the root, I remain quite fearful of Grace returning home and life reverting back to how it was before. Then, when we woke up on Friday morning to go as a whole family (minus Buddy who was in college classes that morning) to visit Grace - I had broken out in hives. I didn't realize what it was until I was researching it on the way home from the visit, but for the first time ever I had hives. Unpleasant things they are;) Stress does a body bad!

The visit was awkward. There really is no other way to think about it. Thursday night during a phone call she had raised her voice at me and argued - the staff who were listening in on the conversation gave her a consequence for it since that is not healthy communication. Friday during the visit we all sat uncomfortably making stilted small talk. As we later reflected on it, it was like being in a room with an animal that has previously been both cuddly and sweet to you, and has bitten you. How do you sit with that animal? Do you trust it to not bite you again? It seems like we look for "triggers" and what we can stop doing so we don't "cause" the bite to happen again. But what happens if there is no rhyme or reason? When it is inconsistent. When it has eventually resulted in you stopping so many things in fear of "triggering" it that you are paralyzed in the corner thinking anything you do could possibly cause a bite? And, almost worse, when you start to believe that you are actually at fault for getting bitten.

Back to the visit - Beautiful and I tried to, again, talk with her about what she wants when she leaves there. What plans she has about how to use the skills that she is learning to generalize back to home. She kept saying she didn't know, didn't think about it, didn't want to think about it, then got agitated. In the past agitated means back off or unpleasant things happen. Everyone in the room got increasingly wary, so I just changed the subject. But it left me with the continued fear that she is not making the changes she needs to make, nor is she being intentional about planning for her discharge.

Fear. Uggg.

Over the weekend my husband and I discussed the situation after yet another bad phone call on Sunday where she again got a consequence for raising her voice and arguing (the only question we ask her before she does this is "what are you learning that you plan to generalize back home?" We have not been on the same page about her discharge plans. After the visit, and numerous disappointing phone calls on this topic, our discussion that day was in agreement - discharging her from the facility to the long-term placement seems like it is best for those of us still here and for Grace to live in an environment where she has time and structure to turn the skills she is learning into habit.

That brings me to last night. She called last night and we brought up this Friday's family therapy session and that we would be asking some hard questions and needing to make plans for discharge.

Then...

She said that she wants to discuss if her therapist and us agree that she should move to "campus." That is the long-term program she was initially denied due to her needing more stabilization first. The one that we want her to go to.

I was so happy that she was thinking ahead. I asked her to have her reasons for this ready to discuss on Friday and she actually already knew them and told us. Some of them are well thought out and mirror our thoughts on the topic. Not surprising one of the peers on her unit had just transitioned to "campus" and Grace had been hearing about it. She also said, "it isn't as strict as here." I tried to explain to her that we had already interviewed for that placement and if she remembered what that interviewer had told us. She was surprised by that. My husband and I think she is just looking for an "out" since we are clear she needs to show more change before she can come home, but it is a healthier thought process than "I don't want to think about it."

So, I am sad that she isn't making faster change and thinking on how to generalize it home, but I don't think that was a realistic goal. I am glad she is now thinking about how moving home would not just be a given without proving change first.

I am sad that, in Superman's words "I thought she kept saying that she wanted to come home, now she wants to be gone longer?" But it really solidifies the thoughts that have been, unfortunately, swirling in my head all week about Reactive Attachment Disorder. I mistakenly thought she was more attached than she clearly is. That has been the hardest pill to swallow this week... I need to process that more before I post those thoughts...

I feel guilty that I feel relief. But, I do feel relief. I was consumed with "what are we going to do when she gets home given that she can't even have a 10 minute phone call with me about real issues without yelling." The fact that she has initiated this conversation is...a relief too.

So, this week has been really heavy and scary with a visit and phones calls that were awkward and seemed to show a lack of change. But it ended on a high note that kept me awake this morning as my thoughts vacillated between feeling relief and guilt/sadness. I know it is the right plan. I am sad it is the right plan. But I know that it is it the right plan.

Lets see what the roller coaster ride looks like next week;)

Week 4 and Month 1 Team Meeting

October 30, 2019

Week 4: Month 1 Team Decision

We continue to have discussions as a family about how all of us are doing. Mostly I hear from the kids that they are thankful for the peace.

My husband and I have buckled down on consequences. The kids seem to be responding better than they have been. They are tired of my statement “work before play” which I have said to them thousands of times in the past decade. Now I am adding “Time Management!!” and “natural consequences!!” which I suspect they will dislike just as much lol!

Thursday night we had a phone call with Grace during which she got mad and started yelling at me. The staff sit next to her during the calls and told her to stop and she would have a consequence. Then she argued about my deserving her yelling so got another consequence. Friday morning during our family therapy time (via phone) I knew it was our last conversation with the therapist prior to the team meeting the following week so I decided I was not going to walk on eggshells and was going to ask some hard questions of Grace. Mostly it had to do with what she was learning that she was going to apply when she gets back home, explaining her choice to yell at me during the phone call that is supervised by staff, and what she would have realistically done if that interaction had been at home without staff watching. The upside is that she was honest. She even listed off things and ended the sentence with “the usual.” The therapist jumped in then about that phrasing and I validated Grace’s statement that any and all conversations with her asking her to be accountable for her choices or anytime she is told any version of “no” will result in much more hurtful comments/behaviors than what she was doing in the first place. I was very happy that the therapist is seeing it, I was discouraged that Grace, even in a highly structured setting, quickly fell back into her typical pattern.

It was a hard session and afterwards my husband said that if she did not have any incidents after that it would show she really was choosing to use the strategies that she is using.

She had two…

Today we had the team meeting. We had planned to drive there but due to the weather turned around and came back home. Therefore we participated via phone. The insurance company approves her stay in 30 day increments. Sixty days are being requested but it is thought they will only approve 30 days and then another 30 days will be requested if Grace’s current pattern of behavior continues. They have taken her off ½ of her meds and today will take her off of the rest. They like to take away all meds and then start over to find a baseline, etc. We are very curious how that will go.

My body has been hurting a lot. I know I carry my stress in my body and it doesn’t necessarily come out emotionally. In my job of listening to countless horror stories on a regular basis I am used to shutting down emotions – but my body carries that stress. I am really trying to be intentional about this situation so that I can heal and be the best mom, wife, etc that I can be. I am working on self-care – continuing to exercise 3-4 days a week. Relaxing in the hot tub. Connecting with friends. Playing with the grandkids😊. But my body continues to be in a lot of pain. I have been to the chiropractor and the massage therapist 3 times EACH in the past month trying to get on top of the pain. They both keep telling me that I am very stiff and tight. Friday was the first time that during an adjustment he couldn’t get me to adjust. Usually that is my husband, not me lol! Saturday I made myself quit doing housework and paperwork at 2 and sat for most of the rest of the day with a heat pad. That seemed to help that day. Sunday morning I woke early, again, and laid there with all of the anxious thoughts about what the future will hold with Grace swirling in my head. I realize that is always rolling in the back of my mind and that is probably why I can’t relax.

JJ continues to have nightmares. I think that he, like us, have just survived the dysfunction and now that it is gone there is a different awareness of it, but also a fear that it will return. For a kid with pretty severe separation anxiety anyway it has been hard. I am not surprised that for him it comes out in nightmares of us being killed and him being left all alone. Beside that, I have not been available to him like I have been in the past because of all of the extra hours I have been working and the changes in our routine to accommodate visits and therapy with Grace. The time I usually have set aside for him is spent trying to finish paperwork, etc then he is the one that is suffering. So…that is something else I need to work on…

Specific prayers at this time:

For Grace to be approved for at least another 30 days of treatment (we will be told tomorrow or Friday if she is approved).

For Grace to use her coping strategies/emotional regulation skills and they will generalize to home when she comes back.

For God to have the “right” things happen in the right timing that will help Grace the most – including the medication changes.

For our family to continue to be intentional about healing, and not live in fear of what might happen.

Praise:

Grace really is in a great place and they are working very hard with her. The threshold is very high for her type of placement and we are so incredibly thankful that she is able to get help there.

God has provided for us in so many ways through all of this. We are so grateful!

So many people have called, texted, or sent encouragement.

The psychiatrist agrees with our diagnostic assessment of her, so we feel like we are working with the best conceptualization of what is happening and not off target in our efforts.

Week 3: The Honeymoon Is Over

My thoughts are all a jumbled mess this week so this will be pretty short. This is the week that if I wouldn't have made a commitment to stay intentional about processing this journey I would have just gone on with doing life and not tried to make sense of it.  So...this post will be a jumbled mess just like my brain...

1) Grace is engaging in most of the behaviors there like she did at home (aside from the physical aggression). On the one hand it is validating that she is doing this for others and not just us. On the other hand it is sad that she is willing to engage in those behaviors even while the stakes are so high and she is in a super structured environment. She does fine on our daily phone calls as long as we let her do all of the talking about her day. If I  ask her what she is learning, how she is applying it, or what we are doing here (tonight I said we were going to the other kids' concert so we couldn't talk later) she gets upset. Tonight she started yelling at me while on the phone and got a consequence by the staff who supervise the phone calls. At first it surprised me as it was the way she always talks to me. Then I reminded myself that so much of what we have "normalized" over the years just to survive is so very not normal...

2) I started the week with fear that has morphed into anger which has morphed into anger/resignation. When people have asked us how we are doing early in the week I became emotional. Yesterday when people asked I realized afterward that I gave very angry responses about how we are currently doing. So I am trying to figure that out.

3) My husband and I are not on the same page about what comes next for Grace. Next Wednesday we have a Team Meeting with all of the people who make the decisions about her treatment and hopefully that will help us to have better wisdom and direction for our family.

4) Home life has been increasing in chaos:( JJ has been having nightmares about us all dying and leaving him abandoned and alone. That has increased his emotion dysregulation and decreased his ability to sleep through the night without coming to us, which is decreasing my sleep. Although I have been struggling with sleep anyway. Thankfully when I woke my husband up the other night at 1:30 a.m. and told him that I couldn't sleep he did not get upset with me - I am so thankful for him:)

5) Superman and Faith have been increasingly irresponsible in the follow through of most of their responsibilities. Upon examining this change my husband and I are realizing that before Grace left we had to be physically in the room with them at all times thus supervising and micromanaging their behavior and time. With Grace gone we intentionally backed off of that and told the kids they were now responsible for their own time, chores, homework, etc. They seem to have little idea how to do that - or just don't want to- and it is very frustrating. I will say that they did not used to be able to ride the bus due to Grace not being able to handle it. Superman gets a ride in early every morning to lifting and he has been able to do that in a timely manner. Now Faith is getting herself to the bus every morning and has yet to miss it. I guess that is a positive:)

6) I am working about 1/3 more hours than usual - that and our time we need to spend with Grace for appts/visits is really disrupting my "normal" schedule and making me a bit crazy as I try to adjust and be efficient with my time while also trying to spend intentional time with the kids (and grandkids) we still have here.

7) We got to go to lunch after church with a dear family Sunday. It was so relaxing and nice!!  I got to go to a volleyball game with a friend last week and sit and talk without feeling guilty my husband was home dealing with drama or having to be on guard watching a kid at the game. Today I got to go to the coffee shop and chat after school hours. Next week I am going to the coffee shop with a friend. I am actually getting to...spend time with non-family members lol!!!!

So, that is it bullet point style. A jumbled mess. Life is easier, different but easier. We all still really like not having to worry about the issues from before. Life is calmer overall, but it doesn't mean that everything is unicorns and rainbows;)

Week 2: Honestly? I am scared.

This week has been harder than the first week. This is the week I was not as busy with work and outside obligations and saw more of what we have been missing.

I have decided that I am writing weekly to help me through the process. In the past I have mostly tried to write when I have come to an end point, a conclusion of thoughts and process that has led me to a good place of perspective. But this stage of our life? It is all about process. I know I am not the only one going through mess. I think that too often we hear from people when they are through the mess and looking back on it. I am here to say I am in the middle of it and it is not pleasant! I initially wrote this with a lot of specific detail on the difficulties we are going through. Then I toned it back. I don't want to make this about complaining and I don't want to villainize Grace. But I do want to be real and transparent. This is my best attempt.

Thursday I was home all day for the first time in weeks. I tried to keep myself busy and productive. I forced myself to be more aware of my thoughts and not just go on auto pilot. Life has been so hard for so long that I have learned to just focus on the next thing. To be present in the moment means to feel - and the feelings are too often fear, hurt, resentment, and an inability to protect/change the situation. Since those are not healthy emotions, and even more importantly, I can't change the situations that make them happen, I just move forward. But that has changed now for a time and I am realizing just how many feelings and thoughts that I am avoiding. My EMDR conference last month talked, again, about the very high rates of autoimmune disorders in people who have unresolved anger (stuffing emotions). As Gabor Mate spoke I thought about my own sense of being paralyzed in our situation and unable to resolve the anger. I don't want that for myself.

So, I have been more intentional about noticing what I am thinking. I knew that "how are we going to deal with _____ with Grace" permeated most of our thoughts. But it seems more tangible now. I am noticing just how many times a day and in how many situations I am anticipating conflict...and then remind myself to relax since it isn't coming. 

Suppertime on Thursday? Suppertime I cried. It was just the 3 kids and I. And my kids talked. They talked and they laughed. They LAUGHED. It wasn't tense. There wasn't conflict or accusations or yelling. It.was.peaceful. I don't ever remember a meal with her present that was just...calm. 

Friday we went to see Grace for a visit. We had 1 hour of Family Therapy before 2 hours of a visit with her in a small room with 4 chairs and a small short table. We talked with her for an hour then played Uno for an hour. The long and the short of it is that she is following the rules there for the most part. I was impressed, in front of her therapist, how she took ownership for her choices. I brought up a couple of particularly bad incidents and how they affected the family, and for the first time ever she did not try to deflect the blame to someone else. I started crying and asked her to really think about how she can now, in front of staff who watch ever single breath that she makes, say and do the right things but when she is at home with us she makes very different choices - and therefore what will the transition home look like? In front of the therapist she gave good "sterile" answers but during our private visit she admitted that right now she is "stuffing my emotions and rages" because of the consequences she will get there. That was a huge red flag for us because that is not "resolving" the issues, that is only stuffing it for the moment. The exact issue she has at home. She gets mad at school or with other people and stuffs it until she gets back home with us and - quite frankly traumatizes all of us. I hate to think about it this way but it is like the abusive husband who hates his job so comes home and takes it out on his family. At work everyone would say he is a stand up guy, but at home he verbally and physically berates his family to express the anger he feels toward his job/boss. I think the most hurtful comment we have received through this process so far is "if she only does this at home then it must be a problem with you." 

I left the visit afraid. anxious.

She cannot come home and do what she did again. We cannot survive it. I now far more tangibly and not just intellectually understand how wives feel who have had husbands be hurtful to them (or husbands with their wives). After the men get into therapy and seem to be making changes the wife continues to hang onto the fear of the husband reverting back to old patterns. Watching for "when" he does and not extending grace-with her fears upsetting the balance of healing. Well, that is where I am at. This week my primary issue I am becoming aware of is that I am scared (actually, in all honesty the emotion is far more intense than just "scared") that she will come back and do the same things again. I like living in a house without verbal and physical aggression. I don't want to risk this tenuous calm our house is finally getting to experience. The freedom of our house feeling like a home. 

So, I recognize that I have a long way to go before I am healed enough to have her come back home. We got the tentative discharge date of around December 1. By then we have to know if we will bring her back home or if we will have her go to the year+ program. At this moment it is an impossible decision to make. I am praying that God will make it crystal clear what direction we are to go. We discussed it as a family and hope that we can bring her home with the other program being the plan if she does revert back. I keep trying to find solace in knowing that I don't have to know yet - that I can trust the one who already knows what will happen. 

Reflections on being a Grandma of 2!!!!

Back in July, the day before our 24th anniversary, we were blessed with a grandson. Our granddaughter loves her baby brother, but with her not being two until next month she is loving him in her 1 year old way. It is sweet, fun, and keeps our daughter on her toes!!

I have been thinking about what kind of a grandma that I tend to be and want to be. With our daughter living so close it can be tempting to step in and try to take over. Well, and my personality is one of wanting to...offer advice. I have had to be intentional about how to be a mom to an adult married daughter without crossing boundaries. We have had to redefine our relationship while building a relationship with our son in law and respecting his authority as the head of their home. Then our granddaughter was born and I had to make sure that I was juggling the lines of being available to help our daughter, encouraging our daughter to be independent, and getting to know this new little person who is such a joy! With Bella I found that I wanted to help take care of her because I adore her, but more than that so I can be a help to my daughter. I want to make her life easier.

Now with her having 2 kids under 2? I really want to help as much as I can. That has been a struggle with the issues with Grace...but I am not going to get into that here.

Our grandson has been more laid back than Bella was as an infant, so I am thankful for that blessing for our daughter:) Bella is such an empathetic helper. Teaching her "how" to help is the issue rather than teaching her "to" help. It is such a blessing to see the fruits of our daughter's loving parenting of her children:) We are still trying to help as much as we can. Sometimes we go a week without seeing them. Sometimes we get to see them several times a week. I am so thankful for the blessing of them living close and we can help them out. In an effort to respect their own lives I find that I am trying to stop and think twice about any advice or suggestions I give - stopping to assess if I am taking over. When I tell my daughter "you are a married adult and their mom so do what you think is best, you don't need my approval" I want to actually mean it!

So there is the balance of parenting an adult married child, but what kind of grandma do I want to be? As I have reflected back about my own grandmothers I have been struck by the fact that my grandmothers were both very very different people. My paternal grandmother was very matter of fact and her interactions with me were mostly about what she could teach me (she was a teacher back in the day of one room school houses and as soon as a teacher married they could not teach anymore-- much to her disgruntlement). Most of those lessons had to do with food as I recall lol! Like how to make a tuna fish sandwich and have it out to the field at exactly 4:00 p.m. so my dad and grandpa could have their break with minimal disruption to the farming. Or how to keep the butter wrappers in the fridge for the next time one had to grease a pan so there was no waste of the butter that was left on the wrapping. Or how to cut 1/2 of the edge of a plastic lid to use as a scraper from a bowl (rather than using a spatula). It is odd that I don't really remember eating much of her food, except for rice krispie bars or scalloped potatoes lol.

Anyway, my maternal grandmother was very different. I remember her being all about hugs, rocking, a soft soothing voice, calming me when I was scared or anxious (which I was a lot), holding me in a blanket while watching fireworks, and delicious food that I got to eat. And the extended family picnics at the park!!! I don't think I ever cooked with her, but I remember her introducing me to Kix for the first time lol! Bacon and eggs for breakfasts. Hot delicious homemade dinner rolls that would be cooling on the counter and I would sneak MANY off to eat (I was too short to even see the counter - I would just grab and eat what I could reach lol!). I never remember her telling me no more. Homemade noodles for chicken noodle soup. Big meals. And Lefse. The one food that, as an adult when I asked, she taught me how to make and I have taught my children to make.

It is ironic to me that I am my paternal grandmother with my children but my maternal grandmother with my grand kids. That is particularly noticeable when 5 of our 6 kids still live in our house and they point out the discrepancies lol! I have talked to my parents and my aunts about the differences in how I see my grandmothers and how they were as parents and there were definitely differences with them too, so I know I am not the only one who treats the grand kids with a softer touch;)

I have wondered why I do that. It is not like I have more time on my hands or am an empty nester craving the companionship of a child - I still have 5 kids at home! I think part of it is getting to focus on the joy of a child without the responsibility of the outcome;) However, the discrepancy is also making me focus more on trying to have more fun times with our kids. Our home has been so difficult for so long that I have hunkered down into survival mode and focused on just doing the next thing. Joy has not been a part of our life for a long time. Therefore, I am thankful for how the grand kids bring laughter and joy,  and the reminder to lighten up a little. I want my grand kids AND my kids to remember that I taught them essentials about life alongside the joy, silliness, smiles, and laughter.

Well, I had better go get the cookies out of the oven. I have already made more cookies for my 23 month old granddaughter than I have ever made for any of the other kids lol!!

Week 1 - Transition

We dropped Grace off at the facility last Wednesday. It was a hard day, but it went better than I had expected that it would. Thank you all for your prayers for her and for our family!

I am going to try to write about each week of this journey. I want to be very intentional about our healing during this time and not just move on with life. We very much feel that for the past decade Hurricane Grace has battered our family/ship and we have been in survival mode. Now that she is gone we are looking around and realizing how much damage, repairs, and updating that our ship needs. It is daunting task. We have defined our life by Grace's behavior on what we can and can't do for so long that now that the hurricane is gone we have sat stunned by the calm and trying to figure out how to best move forward. We could avoid the damage and just carry on. We could get into task mode and just work on fixing "things." Or we could be intentional about repairing the structures of our boat - which we see as the relationships and dynamics of our family members. Saturday my husband and I had the opportunity for a few hours of drive time alone (really the only time we ever get for uninterrupted conversation lol) and we talked through some goals we want to reach and how to start working on those goals for our family. We did devotions and spent time in the Word trying to identify big picture goals. We have set our heading and now are trying to get in working order so we can move forward.

Admittedly, though, that is hard. We feel shock from her being gone, guilt that we like the calm of her being gone, overwhelmed from the reality of what repairs need to be done physically and relationally, and some resentment over how bad things are.

The days leading up to Grace leaving we spent watching movies, our favorite TV shows, eating her favorite meals, and snuggling. We wanted to be sure that she knew that going to treatment was not a discipline or punishment, but a needed opportunity to help her in ways that clearly we cannot do at home. She was pretty emotional about it and did not want to talk about it with us or with others. She, like many people, is a master of avoiding real issues. While I believe those days were necessary for our relationship with Grace, doing those things affected the other kids in a negative way. I think from their perspective they saw "Grace has to leave the house due to her choices" and "mom and dad are crying, sad and giving her everything she wants for these 3 days" was difficult for them to reconcile. I do not know how we could have done it differently though:(

All of us have struggled. JJ was initially more rageful and angry than usual. He had slept through the night since February - and then didn't sleep through the night in his own bed for a week. He has for the past 2 days though - yay!! His anxiety is very high (and I am very tired!!). Faith has withdrawn and been more emotional. We have had some pretty hard conversations with her and she has surprised me some with how she is processing this. Superman has been working overtime in his "peacekeeper" role in our family joking and trying to keep people laughing. Beautiful has been both heartbroken herself and has been trying hard to connect with and sooth my heart - as well as Grace's in phone calls. Even our emotionally level "lets be logical about everything" Buddy has felt the discord and gave Grace a pep talk before she left about learning what she needs to so that she can come home soon. He even gave her a hug!! Everyone in our family knows that Buddy doesn't touch anyone (although he does enjoy a good wrestle with the boys and will be very physically playful and hold his niece and nephew;).

My husband and I? We are the ones who had to make the decision so there is the burden of knowing we made this hard decision, and the relief of knowing that she is in the right place.

I think that all of us are struggling internally with the utter relief of having a peaceful home for the first time in 13 years. And then feeling guilty that we are relieved because that means that one of our own isn't at home. I am still triggering many times a day. First thing in the morning, after school, and bedtime were the worst times of the day so I find that I am "preparing" my mind for those times and then remind myself that I don't have to. Every time someone mentions "when Grace comes back" we all stand around and look at each other afraid to hope it may actually be better and afraid that we will get the reprieve just to get hit by another storm again.

My body is really sore. I finally figured out that I am always holding my body so tense preparing for the next wave of the hurricane that now that I don't have to I hurt. Several times I day I practice relaxing my muscles. I had no idea how much tension I was constantly holding. Also, my blood pressure got to its highest point about a month ago and is now back to normal:)

Grace is allowed 1 phone call in a day and one phone call out. So we talk to her 1-2 times a day (depending on if she calls us or Beautiful for her phone call). The first 3 days were tough. She cried and begged us to come and get her. She kept insisting that the program wasn't the right one for her. Finally on Friday I told her that the program was excellent and it wasn't about the program being "right" for her, but that she was responsible for working the program. I told her it was the very last option and she had a choice if she was going to make it work or not. Saturday and Sunday the phone calls were more mature. In fact, Saturday I had the most mature conversation with her - ever. She actually took ownership for her behavior and didn't blame it on someone else. Hallelujah Jesus!!!

I don't know what the future holds but we are trying to set our goals, focus on what is most important, restore and rebuild/build healthier relationships and dynamics within the family, and trust that God will work it all out in the end. We are so thankful for the support and encouragement of so many people!

When "yes" is Bittersweet

Friday, after 6 weeks of waiting, we were told "yes." I do not know if I have ever had a "yes" be so bittersweet.

I am not really even sure what my thought process is and I am struggling to slow down my thoughts and rein in my emotions enough to even know how to answer the questions "how are you doing" and "how can we help" when we are asked.

Grace has been accepted to the residential program that we applied to 6 weeks ago. She leaves tomorrow. Tomorrow.

On the one hand I am so hopeful that she may finally get the help that she needs after we have exhausted every other option available and known to us. On the other hand I am so broken hearted that she will not be here with us for, most likely, quite a while.

On the one hand I am so frustrated that it took 6 weeks to get the approval. On the other hand I know I needed the 6 weeks to really know that she needed to get this level of treatment or I may have backed out - to Grace's and our family's detriment.

On the one hand I am emotional and sad that she has to leave for a time to get help. On the other hand I am, quite honestly, so angry that she has to leave for a time to get help. Why couldn't she get better while saying with us?

On the one hand she sobs in my arms upset that she has to go. On the other hand she will not stop doing the things she does and now has left us no choice - despite being told for the past 2 years that this was the path she was on.

On the one hand I have so very many thoughts and emotions that need to be sorted. On the other hand I just can't...

Ironically I have thought of when JJ was born. It was such an incredibly exciting time for us to adopt him. I loved getting to know his birth mom briefly in the hospital and to get to take pictures of them together for him to have. I remember being confused why she wouldn't smile for the pictures with him - shouldn't she want to have smiling pictures for him? After we got home though I realized what a short-sighted fool I was. Yes, it was a joyous day for us. But it was a very bittersweet time for her. She was giving her son the hope for a future knowing she couldn't do it herself. But that meant that she couldn't do it with him. A choice that required her to trust God and us to provide everything that he needed without any direction from her. Exactly what we are facing right now.

I am also wondering if the day we had to hand Superman and Faith's little sister back to HHS after we were told we couldn't adopt her since closer biological family was found (to date the worst day of my life) will rank easier or harder than walking out of that facility with out Grace on tomorrow.

Just because someone is making the right and necessary decision does not mean that it is a joy filled or easy one.

Thank you for walking this journey with us. Thank you for caring enough to check the update on how this process is going. Thank you for not judging us.

Please pray for Grace. Pray for them to get to the heart of the real issue and have the wisdom and finesse to address it effectively. Pray that she does not feel abandoned by us for making this decision. Please pray for her safety. She is so naive and immature we are all so worried that she will be taken advantage of by others.

Also pray for the rest of our family as we transition. It is hard on all of us. Last night as Grace hugged her big sister and niece and nephew goodbye we are all wondering when they will see her again. Will she get to come home for Bella's birthday? For holidays? We will have to drive there often as the programming requires us as parents to be involved. We are thankful for that but it is a huge time commitment. That takes us away from the other kids too. Throughout the course of this process my husband and I have been on the same page of what needs to happen...but we have also been the most emotionally disconnected that we have been since our first decade of marriage. This situation is taking its toll on us and we need to find time and ways to reconnect. All of us need to find ways to reconnect and find a new normal that is healthy and peaceful. The other kids are acting up as Wednesday approaches. All of our emotions are all over the place and we need to settle.

I guess to sum it up - this is not easy. We finally got the help we have been asking for, but that does not mean that the journey is now smooth and joyous. I am working hard to reframe this situation in my mind as an opportunity and not a tragedy. Sometimes I get there, sometimes not. Your prayers help so please don't forget about us.

I am so thankful for our sovereign and powerful God. Trusting in the Lord...

Lessons in waiting, rejection, and waiting again...

We had the interview for the long term residential program last week. We were told that we would be notified by Friday afternoon one way or the other. We were not. It was a very hard weekend not knowing what was going to happen. To be standing at a crossroads, not entirely committed in my heart to either road, and not having answers to make the decision was very hard on me. My health has been affected by this long-term stress in not great ways. I am having to be intentional about how to handle the bodily stress in healthy ways while still living with the reality of the stressful situations. The help we are getting in respite from our friends, reading, talking honestly about our situation, exercise, healthy eating, time in the Word, prayer, (and my "me" time getting to enjoy our hot tub ideally without interruptions by disgruntled children lol) are all helping.

The weekend was really difficult. I have learned that I need a Sunday nap. I really, really need it. My whole family knows that we plan nothing for Sunday, no one comes over, no one gets hauled anywhere, it is just down time. A sabbath. And I take a nap. It is the only time of the week when I actually get to sleep without worrying about a kid. My husband is awake and dealing with them so I don't have to keep an "ear" out for them. It is the deepest sleep I get all week. 1-2 hours of real sleep. Except that for the past 2 Sundays I laid there for 2 hours trying to sleep, even took the sleep spray that puts Grace and JJ to sleep, and still my brain spun with "what are we going to do?!?!?" So I spent the time praying and surrendering it all to God. I was so worried that Grace's problems wouldn't be seen as significant enough for anyone to help us. I was worried the people would say that we are being dramatic about asking for help saying "she is just 13" and they wouldn't help us. If so, then what?

Monday - no information.

Tuesday - we were informed that Grace was denied for the program. But not for the reason that I worried about. She was denied because her behavior is too extreme for their program. On the one hand that was very frustrating and I went back to "now what?!" I finally asked for help and now I am being told no. On the other hand it was validating to know that her behavior is, in fact, as disruptive as we think it is. It is not just that she is "a 13 year old girl."

What is next? There are different levels of treatment at the agency we are looking at, depending on need. We had applied to a 12-15ish month residential program where she would be living family style with 7 other same gendered kids ages 10 -18, going to school, having structure and rules, consequences and rewards, etc.  The next level of treatment would be more of a therapeutic group home. Above that is Residential Treatment Center which is a locked hospital like setting where kids stay 60-90 days and are provided with structure, supervision, school, and therapy. Then there is the psych hospital setting that most people think of where a person goes in if they are imminently suicidal/homicidal, meds are adjusted, coping skills are taught, and they are back home in around a week maybe helped, maybe not (I deal with this a lot in my work). An application has been submitted to a Residential Treatment Center since that is what was recommended by the person who turned Grace down for their program, and now we are back to...waiting...

I have a lot of peace about where the process is right now. I think that I needed the weekend to really come to grips with accepting that this was really happening. To accept that this is really what Grace needs and not have guilt over it. Most people have been overwhelming supportive of us in this process. There have really only been 2 people who have vocalized any dissent. I am thankful for that. My thoughts are that until a person has lived in our shoes and understands, then that person needs to keep his/her comments to his/herself unless s/he is truly trying to understand.

In the mean time she has had a pretty good week. I think that after the interview last week the reality of what is being considered is really making her aware of where her choices have gotten her. School started yesterday and normally mornings are a nightmare. But she had two good mornings. Two consecutive mornings. I am learning to accept those gifts when they come:) I decided yesterday that I would sit down when they started eating breakfast and read devotions until they have to brush their teeth and get in the car to go. That way I am trying to help them get their thoughts focused correctly, and I am minimizing the chance of them fighting while still in the house since I am not allowing them to talk lol! Maybe it will only last 2 days, but 2 days is more than 0:) This morning she was really trying to fight but allowed me to shut it down. That is progress:)

Another piece of this that would have been talked about for sure in my Gaslighting post is that we have not one, but 2 daughters with RAD. It has been a toss up depending on the day on which daughter needed to be considered for a higher level of treatment. Faith meets the criteria for going to the long term program. She has improved over the summer. However, school is a HUGE temptation for her as she gets so many more freedoms than at home. Now that school has resumed we will wait and see if she was just biding her time or not. Interestingly we had 3 different people ask us last week "why did you send in the application for Grace and not Faith?" Grace's behavior rules our house and every outing we make but she keeps it in the family.  Faith's behavior happens out in public where others witness it and are hurt by it.

So, she has been informed that if she does any of the behavior at school she has done in the past 2 years that her application will be going in. She is less than excited...

Often I say to myself, "I must be horrible at this parenting thing since I have 2 daughters so out of control!" Then I remind myself that I have raised 2 kids to adulthood who are doing well, and I have 2 sons that are doing fine. I can't control their choices. I can't control what they believe about themselves and the world. I can't really control anything lol!

It is that letting go that I have really settled into the past few days. I know in part it is due to your prayers. Wednesday I finally got that nap I so desperately needed. My brain finally slowed down enough to let me sleep. It seemed to reset my brain as I am now in a "it will all work out" mindset. Before that, well, let's just say that my husband was giving me not so subtle hints that I was losing my mind before that;)

Tonight we are all going out for supper for JJ's birthday. Well, the 4 youngest kids and my husband and I. I am stressed about how Grace will do and if she will...do what she does. Normally I would say, "uh, let's see if she can stay home with Buddy and get to bed on time" or "I wonder if someone can keep for her until bedtime." But, we are going to try it. I literally get nauseated every time I think of going somewhere with her in a vehicle when we can't get home in 15 minutes if the situation goes south. But, we will try it. Hope springs eternal, right?;)

Thankful for Help:)

I am so thankful for a couple of women who have been so helpful in providing us with respite. Last November I met with a friend who offered, then insisted, that she help. I don't like asking for help. I don't like admitting that I need help. I don't like bothering other people with "my" problems. So accepting help? That is hard for me. Thankfully she didn't take no for an answer. She has taken Grace many times over the past 9 months and it has helped to give us a break. 

Last month "things" got worse. Another woman came alongside us too and helped to take Grace even more. In the past month there were only maybe a weeks worth of days that we had her all day and she didn't go with one of those women. We were so thankful that she had a sleepover one night. That allowed me to go out to a movie with my oldest child and for us to go celebrate our youngest's birthday the next day drama free. 

That respite didn't necessarily help our daughter's behavior at home, but it was so helpful for the peace in the home and our productivity since we could get more done than just referee. It also helped my peace of mind when I worked long days and worried about my husband home doing it all alone.

If you know someone who looks like they need help, offer. Then, if they are really stubborn like I am, insist. Don't say "can I bring you a meal?" Say, "What night can I bring a pan of lasagna." 

Don't say, "can I help?" Say, "What can I do?"

Don't say, "can I take your child sometime?" Say, "What day this week would work for me to take your child for a bit?" (or mow your lawn, or whatever the person may need). 

Because some of us keep thinking we don't need help. Some of us are too stubborn for our own good. Some of us think it makes us a failure to ask for or accept help. Some of us don't want to bother other people with our problems. 

Thanks for praying. Thanks for offers of prayers. But if you feel led to physically help someone, insist. They will (eventually;) appreciate it:)

My Heart Is Breaking...

In December 2017 I wrote http://aeiour.blogspot.com/2017/12/being-very-very-real-about-our.html blog. We had moments since then that were promising...for short periods of time. I just kept thinking, "one more intervention." "one more try." "one more day." "one more..."  But when I sat down to write http://aeiour.blogspot.com/2019/07/my-current-struggle-with-process-versus.html blog post my journal opened to the top page which was the 2017 post. I was so disheartened that the exact same problems we were having then...are happening now. There has been no overall improvement in all of that time. Reactive Attachment Disorder sucks. That is as eloquent as I can make it.

My heart is breaking being in this position. The position of having to make a decision if our home is the best option for Grace, or if she needs to go to residential care for a time. If her remaining in our home at this time is good for the other kids. For those of you who have seen the movie "Sophia's Choice" when the mom has to make an immediate decision in the concentration camp of giving her son or daughter to the Nazi's?  That is what I feel like. Although, of course, residential care is not a physical death chamber - I still worry about the psychological repercussions for her. There is absolutely no easy decision. There is no win. My mind swirls with all of the "what ifs" and I just want to run away from the decision and not make it. I want to curl up in a dark closet and not think about it. I want it to "just be better." I am desperate for someone to just tell me what to do. To promise me that "this" decision will result in unicorn and rainbow outcomes. I don't care if the process is hard, I just want a good outcome! But, as I posted about earlier this week I know that is not a promised outcome. I keep reminding myself of that. Often.

Today we are going in for an interview to see if the agency will accept her into their residential program. I can't stop worrying about how to make this decision.

What if she is accepted and she leaves?
What if she isn't accepted and she stays?
What if just one more day, one more intervention, one more hug will make all of the difference?
What if she stays and nothing ever changes?
What if she goes and nothing ever changes?
What if she leaves and feels rejected and abandoned by us?
What if she stays and our other kids feel rejected and abandoned because we didn't protect them?
What if she goes and someone hurts her?
What if she stays and keeps hurting our other kids?
What if I am a terrible mom for even considering this option?
What if I am a terrible mom because I didn't pursue this sooner because I thought that "I" could make it better?
What if I make the WRONG decision?!?!


But it is not an "I." It is a "we." I am so thankful for my husband who is willing to listen to my fears and calm me. To remind me that we are a team and I am not alone. To remind me that he is the stay at home dad and deals with the brunt of the issues and is therefore very informed on the issues involved in making this decision. God is also very clearly present and helping guide us. We also have many friends who understand and are supporting us.

Lord, please make the path we are to take clear. Very clear. Thank you for knowing the outcome, and the process. Thank you for being trustworthy. Thank you for being sovereign. And thank you for blessing me with a husband who follows and trusts you and is the perfect partner for me in this difficult role of parenting.

JJ Update: IEP and learning with Apraxia

Traversing the landscape of understanding and intervening with Apraxia has been a steep learning curve for us. It would be hard enough, but then we have other kids with "stuff" that have their own steep learning curves. It is exhausting and often we do not know what the "right" direction is to benefit our child the best. One of those areas has been the effect of Apraxia on learning.

When we first had the diagnosis of Apraxia for JJ I knew that it's official name is Childhood Apraxia of Speech. I had thought it had mostly to do with speech. However, JJ's difficulty with speech is just a small part of what impacts him. So as he got to school age we started to realize, then research, how much his learning is impacted. Apraxia doesn't just affect speech, it affects "language." I have a friend who is a Speech Language Pathologist and when I first met her I had absolutely no clue that "speech" and "language" are two very very different things. Language is not just "grammar" like one would think in English class lol!

I found this way to described the difficulty of language, not just articulation of sounds, for Apraxia that I thought was very helpful to my understanding from www.speechandlanguagekids.com:

What is Childhood Apraxia of Speech (CAS)?CAS is a rare, neurologically-based speech disorder where the child knows what he wants to say but the message gets mixed up in the motor planning and execution phase so the sounds come out all wrong.

Imagine it’s like you’re driving your car and you know you’re going to turn right so you turn on your right turn indicator (or blinker).  But then, for some reason, your clock starts flashing instead of your turn indicator light (true story, I once had a car that did this).  So you think, “Well that wasn’t what I wanted to happen” and you try again.  This time, your trunk pops open!  Imagine how frustrating that would be!

That’s exactly how it is for our kiddos with CAS.  They know what they want to say and they tell their mouth to say it but it just comes out all wrong.

So, in addition to him not being able to speak the right words, he struggles with being able to "pull up" the right word. For example, if he wants a strawberry he can describe what he wants (e.g. I want the red thing, that is in the fridge) but usually can't actually recall or say the word "strawberry" (which is so odd that he can remember colors, "fridge" and other descriptive words but not the actual name. But think of the people that you know with the start of dementia who can remember things you have done together but might blank on your actual name). Now, if there were 10 fruits sat in front of him and you ask him to point to the "strawberry" he would do it without any delay at all. The problems is with "expressive" speech, not understanding the language. 

Therefore, imagine the extreme difficulty with learning how to read. He can see an "a," he can point to the "a" in a lineup of letters, but he cannot see an "a" and pull out of memory the sound for "a" and then say the "a" without a lot of mental effort. Not to mention that "a" has multiple sounds that must be remembered!

Then the next level is putting together multiple sounds. So he has to remember the sound for "b," then hold that in his head while remembering the sound for "a," and hold BOTH of them while pulling out of memory and remembering the sound for "t." Then put it all together at the same time. 

We struggled significantly with figuring out how to help him learn how to read. He didn't speak in a way that we could consistently understand until he was 5. So by age 7 we were still primarily focused on articulation so he could be understood, and trying to figure out how to help him remember letter sounds. Mostly we used a song and a corresponding picture (e.g. a, a, apple; b, b, butterfly). So then when he would see the letter he would call it "apple" or "butterfly." lol! Imagine trying to teach a kid to read when he thinks /a/ says apple:) 

So after a lot of struggling, a year ago at age 7 we decided to have him assessed by the school to see if he qualified for an IEP so that someone with specialized training in those areas could help him. It was a very hard testing results meeting for us to attend. He qualified in 7 areas. Of course all of them were related to reading - including math because some of the math required reading. (We also had him assessed at age 4 and he qualified but we strongly disagreed with their recommendations - that we could not be with him during services. And with his strong separation anxiety at that stage and the fact that he would not speak with anyone except family we sought private services instead (how in the world were they going to get him to speak properly when he refused to speak at all unless we were with him?!?) and turned down the school's offer. But since making progress with the separation anxiety we decided to try again).

The outcome of that meeting was him going to the public school 3 times a week for this school year for a couple of hours each for work on speech articulation, language skills (like understanding language concepts such as "over, under, etc" and being able to name items that are pointed to), math, and learning letter names/sounds/how to read. He also has an occupational therapist helping him with handwriting.

He has made progress in the past year and is now actually reading. It is still very hard for him and by the time he gets to the end of a sentence he often cannot tell us what the sentence was about because he has had to spend so much time decoding letter sounds/blends that he can't also retain the actual meaning of the words he just read. 

He hates it. I am not overly excited about how they are conceptualizing his issues as individual to him, rather I think they are trying to just put him in the "box" of their curriculum. But, again, I am not the specialist. But he really hates going. We told him that as soon as he can read well we won't make him go anymore. That has been his motivation - but it is taking longer than he wanted it to...

But, give the kid a math problem and he thinks through it well, and is right on track for the Math-U-See curriculum that we use for him at home. He is a very outside of the box thinker, is curious, and is not held back by "you can't do that" when he is trying to solve a problem. He has learned so much of this world by trial and error instead of "you should do this or that." I love how he thinks and once he can get reading mastered I think he can take on the world.

I strongly disagreed with their IQ testing of him, but even with that he qualified in many areas for help. I have been trained in IQ testing and have conducted many IQ tests on others in my early career. But even IQ tests are based on "norms" of the mass population. But every population has "outliers" and I believe JJ is one of those. I will never forget my graduate Ethics class being taught by a woman named Elaine. I can't remember  most of my professors in all of my college years but I remember her. She had a doctorate degree...and had Cerebral Palsy. As part of teaching us Ethics in our career she drove home "know why you do what you do!" She described herself as a young child who was tested for her IQ and the testers told her parents that she was developmentally disabled (not the word for it back in those days) and to just take her home as she would not amount to anything. Many parts of IQ tests are timed. For a person whose hands shake or it takes them time to articulate answers (it took Elaine a long time to say what knowledge she was imparting to us, but it was worth it!) - it does not mean that they do not know it! It means that you have to test them differently. I learned so much from Elaine and I am so thankful that her parents went home, dismissed the IQ tester's results, and just found other ways to get their brilliant daughter the opportunities that she needed to be all God created her to be.

After JJ's testing results meeting my heart hurt but I remembered Elaine and decided that we would let him go and get that specific help, but that JJ is not bound by what the norms on a test say make him in "normal limits" or "below average." I do not believe they see him any different than the test results, but that is just the reality we have to accept.

Two months ago we had the annual IEP followup meeting. They agreed that he has made gains, but I think they still really see him by his limits. In an effort to live by "if you don't have something nice to say don't say it at all" I will not say more on that.  So, I have been seeking other opportunities to get those gaps filled in for him. I have a couple options that we hope to focus on this summer. We will see what comes of it.

I am in the midst of trying to figure out what to do for home school for him for next year. He is not an auditory learner. Being as he also cannot read I often feel like some subjects that I teach are like trying to teach Helen Keller. She had a brilliant mind, but it had to be tapped into by people who loved her and didn't give up. So, I am trying to think outside of the box (not my forte). For example, reading him his history and science lessons isn't resulting in him absorbing any information. So for yesterday's science lesson I pulled up youtube videos on "hovercrafts" which he did have a short attention span for. When I noticed that he was losing focus I showed him videos of "hovercraft racing crashes" which renewed his interest lol! Then we watched the original footage of the Wright Brothers' first successful airplanes for history. Of course, then he asked for footage of ice hockey fights. The other day when we did this we pulled up several live streams of space satellites, baby eaglets, etc but he thought they were boring! Boys lol!

Most of the curriculum that I have is a "classical" style which is a lot of reading historical fiction, etc. I LOVED it with my oldest 2 and it worked great with them. With the Middles we had to switch it up due to learning styles but with 2 of them it was a good fit (until other issues resulted in us having to put them in a Christian, then public school). But it is not at all a good fit for JJ. So I am grieving this style of teaching and having to think outside of the box to figure out what will actually work with him. And then having to purchase all new curriculum (sigh). I know for sure a traditional classroom will not work for him.

Also, if you remember from the last post about getting him to sleep - I had to reward him with Fortnite every day that he slept through the night as that was the ONLY "carrot" big enough to entice him. I am so excited to report that he sleeps through the night all but a couple of nights a month all night in his own bed!!!!!!  Finally!!  After 8 1/2 years lol!!! Anyway, I have now added that he has to read a book every morning before he gets to play Fortnite. And for every book he reads he gets $1. Yes. It is a major reward for doing what, in my opinion, just needs to be done. But nothing with raising JJ has been easy...  I just keep adding on (not too much at a time that will overwhelm him and make his refuse to do any of it) more stipulations to his Fortnite time on things that are on the "you have got to do this" list (like reading and sleeping). But, yay to my husband and I for getting to sleep most nights through the night!!!

We will figure this parenting and CAS thing out:) In the meantime, I am so thankful for home schooling, for computers/internet/you tube, for tons of different types of curriculum options, and for a woman named Elaine who didn't succumb to the low expectations of an IQ tester but instead didn't give up-finding other ways to achieve her goals - that changed people's lives:)

JJ Update: Sleep

After 8 1/2 years we are finally making some gains in JJ sleeping! I have shared about our many attempts at helping him sleep through the night. It has been a long journey. With his severe separation anxiety, inability to self-sooth, and struggles with fear/nightmares (they are always about someone killing him) it has been hard for us to know how hard to push regarding sleep. We used to have the problem with him taking 1-2 hours to fall asleep at night, not sleeping until midnight or 1 a.m. But a little over a year ago now I discovered Sleep Support and Renewal by Isagenix. That makes him fall asleep usually within 15 minutes! But while the spray helps him (and others) fall asleep quicker, it doesn't help with middle of the night awakenings...

Our reality is that we have a 5 bedroom house. We have 3 bedrooms downstairs where the girls, JJ, and us sleep. We have the boys in the bedrooms upstairs. Ideally JJ would sleep with Superman upstairs, but he refuses to sleep that far away from us. The girls can't sleep in the same room because they pretty much hate each other and fight constantly (not just middle school angst). So, JJ had shared a room with Faith for several years. With the escalation of Faith's behaviors a few years ago JJ felt less and less safe so he was moved out of there over 18 months ago...leaving the option being our bedroom. Before that he would fall asleep in our bed and I would carry him to his bed and sometimes we were fortunate that he actually slept there all night. Most nights he came back to our room at some point. Then he got too heavy so I insisted that he fall asleep in his own bed. That was harder and he never did really sleep well. Then 18 months ago it was a moot point and we just brought his mattress to our floor and he slept there (he started there at least). Things were going pretty good for about 6 months where he mostly stayed on his mattress all night. Then he had his first video conference with his mom in May 2018 and... his nightmares started back up with a vengeance and he never made it through the night on his own mattress for 8 months. I would wake up with him standing beside me saying, "I had a nightmare" or "I need you."

How does one say no to that?

But I was struggling with knowing when he was really having a nightmare and when he was just wanting to get in our bed. And then I struggled with my heart on if it really is such a terrible thing for a kid to need comfort in the night and come to his parents? I don't think so. But, then I struggled with if he was actually needing comfort or if he was just in a bad habit that needed to be broken. I know that some nights when he said he was having nightmare his heart was racing like crazy and he would cling to me like a monkey. Sometimes it would be 3 or 4 a.m. and he would adamantly refuse to go back to sleep again, so I know the nightmares were real and bad. But other times I felt like he was just going through the motions.

Then in January (I think) he got sick again with influenza and his coughing led to him vomiting so I sat him upright on the futon in the family room outside of our bedroom for a couple of nights.

THEN...

He decided on his own that he wanted to start sleeping there. Yay! Throughout this whole sleeping process I have known that if I am going to make a stand about him sleeping on his own I have to be firmly devoted to it and not back down (I say "I" and not "we" because JJ only wants me at night. My husband is willing to support whatever gets decided). Thus, with the nightmares I have never pushed the issues. I want to make sure that he knows that he can come to us if he needs us. But I also want him to figure out how to sleep through the night. I know that the nights he sleeps in his own bed all night he is better rested during the day (as are we lol!!!!!!!!). Part of that, of course, is because he didn't have a nightmare affecting his sleep.

And living in this house with the issues we frequently deal with definitely inspires nightmares.

I strongly support kids coming to their parents anytime, day or night, if they need them. I strongly support kids knowing that they have a voice and are heard by their loved ones. I strongly support kids knowing that they are safe. Those are the driving foundational issues that I seek to secure with our kids. I believe that is what builds trust. Without trust I believe kids won't feel secure and obey the authority in their life, and by extension I believe that affects their relationship with God. So, we work to help our kids develop trust. I believe that is why our daughters struggle so much - they do not trust us (the hallmark of an attachment disorder). Watching that progression of problems with our daughters has led us to strive harder and harder that JJ know, without a doubt, that he can trust us and come to us any time he needs us. His speech limitations have made that process quite complicated, but it is our goal none-the-less.

But we also want our kids to be able to be secure, mature, God-fearing adults who love and obey the Lord and serve the Kingdom. We began to feel like we had to push the envelope regarding sleep so he wasn't just complacent in coming to our bed at night rather than coming when he actually needed us.

So we made a plan that we could agree to and not back down. JJ's greatest motivator is video games. It is probably his only motivator that has any hope of actually working. So, he was told that if he slept through the night in his own bed he would get to play an hour of his favorite video game the next day rather than only getting to play 1 hour on Saturdays.

Yes, I motivated my child with a video game. I am ok with that.

It has been just less than two months. It initially worked well. He was told if he needed me at night I would come back to his bed (the futon) with him and stay until he fell back asleep so that he knew he could still come to me, but that he couldn't get in our bed unless he understood he would lose his video game the next day. We went on vacation and I thought that he would revert back in an uncomfortable setting, but he slept great in a room with his brother every night. We got home and for a week he remained on the futon. He did have about 3 incidents I think in that time frame when he came to me and I asked him "do you understand this means you will lose the video game?" When he said "yes" I knew that he was truly having a nightmare if he was willing to give up the video game.

But...I pushed the envelope:(  A week after vacation his brother was gone at a sleepover so I asked JJ if he wanted to sleep in his brother's bed with the dog to help him feel safe. He said sure and did sleep all night. I then got excited and moved his mattress upstairs to Superman's bedroom and thought we had a good thing going. JJ was not as excited. I did stay with him to fall asleep there (as usual) but it took him a long time to fall asleep (even with the sleep spray) and each night he made it all the way back to our room in the dark (he must have been very scared to navigate the house in the dark, he usually will not stay on a level of the house without one of us on the same level). So after a few nights of that he told me he was going to back to the futon, of course I did not argue. But now he is back to waking me every night again (I told him that if it is after 6 a.m. he can stay in our room since I am about to get up anyway, but if it is before 6 he has to go back to his bed or have me take him back to the futon).

So a week after I moved his bed upstairs, I am back to the same problems we had in the beginning. Saturday night he came to me at 2:30 and I took him back to the futon. He came back at 4:30 and just got into bed. When I informed him after he woke up that he lost his video game today he got very upset. He doesn't remember coming into bed, which I actually believe. And I know that he had a nightmare that second time because his heart was racing and he clung to me. He keeps saying that he doesn't remember coming to bed. I keep saying, "where did you wake up?"  Then he started thinking about it during the sermon in church and started fighting with me physically demanding that I let him play the video game. I know his emotions get so big that he can't work his way through them himself (he cannot self-sooth which is why he can't put himself to sleep at night, etc). But teaching him this skill has been difficult. I am realizing more and more all of the various facets of the apraxia/CAS and how it affects so many unexpected areas of his life (just like ADHD does his sister's life). Put the purpose of this post is just about the sleep:)

So, I am not sure how to proceed. I help so many people deal with their nightmares and I cannot help my son eliminate his. He is worse on days that he anticipates me working. He hates when I work. He hates when we leave him at the school without us (the school post about what is happening there is coming later). He is worse on days when I am gone 12+ hours and can't hold him for an hour every day like he wants. He is worse when the birth families are discussed. But, like most things in life, there is not hard and fast "formula" that "if we do this, then he will sleep through the night, guaranteed."

I was really proud of him last night. He likes the vibrating buzzers that I use for EMDR. He finds them very soothing - I will have him use them when he wakes so terrified at night that he won't go back to sleep. So last night he asked, on his own and out of the blue, if he could use them until he fell asleep. He did sleep through the night:)

 This kid really is an enigma on so many levels. But he is smart, funny, tenacious, curious, so protective and gentle toward his niece, clever, and sweet. Despite all of the challenges I love him so completely and am so thankful that he does not have an attachment disorder. God has brought him into our home and has brought him along so far, teaching us as parents so much through him. He is speaking much clearer, learning how to read, and no longer has the failure to thrive eating issues he had before (although his eating habits are not "normal" and still has the Rumination Disorder, and he is at the top of the growth chart now instead of barely on it) . He is excited to be playing baseball this year. He is willing to leave us in settings now where he is familiar and around familiar people. We will keep trusting God to work in JJ, continue to grow and mature him, and help him to feel safe. We also keep trusting God to work in our hearts as we navigate life and parenthood;)