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.