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 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 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...

A Week to Remember!

10 days and counting with no rages!!

TEN DAYS!!!

That has never happened.

The day Grace started the new medication was 10 days ago and she has been doing so well. I catch myself having the oddest thoughts. Like Monday night when I got home from work and knew she was just heading to bed. Bedtime has been a terror for everyone in the house. But when I pulled the car into the garage and was readying myself to go into the house I noticed something that I had not noticed for a very, very long time...I did not dread coming home. My body was relaxed, I was optimistic and not just gritting my teeth to get through it. It felt like I think everyone should feel when they come home - excited to see their family.

Last night when she had WAY over sugared herself eating all kinds of junk at school it would normally have been a time that the whole family went on lockdown just waiting for the explosion. Watching her jump over couches, her talking and behavior just too fast, etc. used to make us all figure out how to get her contained before the rage hit. But, when we told her it was not a good idea for her to go to Awana while she was so hyper (we had considered letting her have a try at it again) she asked why but did not rage at being told no. She went to bed on time and there was no drama at all!

In fact, she hasn't raged at being told no in 10 days. Normally, any kind of limits set by us are met with extreme behavior. No matter how ridiculous her request was or how carefully we try to set the limit.

All of us are trying to figure out the "new normal." We are all just watching and waiting. The thing is, that the tension in this house as we all walked on eggshells all of the time anticipating what the next trigger would be that would lead to chaos has been lessened. Significantly. Now we watch and wait...but it is almost to just reassure ourselves that she ISN'T going to rage. I would say that the tension level in the house has gone from a 10 to a 3.

Peace. In this house. Who knew?!?!?

If you suspect that a family member of yours possibly has bipolar-like behavior - get it checked out! Medication really makes a huge difference!!!

I have wondered since she was 2 if she has bipolar disorder. However, the ADHD stimulant medication helped during the day and the behavior was constant, not cyclical. So I dismissed the possibility. In researching DMDD since then, I have learned that one of the treatments is stimulants. That explains why she would be better during the day, but of course, because it is a stimulant, it can't be given 24/7 so we still had to deal with times the medications were not in her blood stream.

Saturday was probably the biggest test for me seeing if her behavior the previous 3 days was just a fluke (sometimes she would hold it together for several days if she didn't have any limits or boundaries placed on her). My husband had to take Superman to an all day basketball tournament. I had told the kids the night before to stay in bed as I had hoped to actually get some sleep. Between JJ's nightmares and my worries about the girls' behavior I hadn't been sleeping well. Also, it usually takes me some time alone on Saturday mornings to just get myself in the head space to even deal with the angry, chaotic, venomous, vile behavior that starts within minutes of my first interaction with her during the day. 

My husband came back into the bedroom at 7:30 to say goodbye. He looked like he was scared to say to me, "I am so sorry but all of the kids are awake, even JJ." I just sighed and said, "ok, I think it will be ok." I showered quick and got my head ready to deal with the girls. Whenever we shower we have to have the girls separated in their rooms with alarms on their doors or who knows what kind of trouble they will get into. I got them upstairs for breakfast.

No drama. I was shocked. I watched them eat their entire breakfast and Grace didn't yell at anyone for anything.

Then, Grace walked behind where Faith was sitting at the table. She bumped Faith in the head with her arm. Normally that would have been an explosion. Grace would have been screaming at Faith for purposely leaning back and running into Grace and it would have been a mess ending in Grace going to her room for a long time to calm down. I can't even remember the last Saturday when Grace made it the first hour of the day without being sent back to her room to calm down - leaving the rest of us angry and frustrated and out of sorts.

But...Grace just turned toward Faith and said "oh! Sorry!" and went to her chair.

I stood there. Jaw dropped. And cried.

Grace does not accept responsibility for hurting others (even accidentally) and she does not initiate an apology. It is ALWAYS someone else's fault.  I thought, "9 a.m. and no drama yet! Wow!"

I decided to play Christmas music since I had planned to be baking with the girls a good chunk of the day. That may not sound like a big deal to you, but in this house we haven't played music for years and years. Music means more noise. More chaos. More voices for Grace to just yell over the top of. More stimulation. So we don't play music. I thought I would see how it went and it was great!

After breakfast I thought I would test it a little further and allow the girls to go downstairs without supervision to do their chores while I was making Lefse. Faith was cleaning the bathroom and Grace and 2 loads of laundry to sort and fold (she is an excellent clothes folder - not so great with sorting, but she folds clothes great!). I heard a yell over the music and thought "here we go:( " I flipped the lefse and ran downstairs. I heard Faith laughing and Grace saying "its your turn." No screaming. No tattling. No blaming. No venom. I came around the corner and Faith said, "did you hear Grace?" I said that I did, expecting to now hear some tattling. But then they both laughed and said they were having a "singing competition" while they were doing their chores (both of them were actually making progress on their chores! Shocking in and of itself lol!) and that yell was Grace's song.

Huh.

So I went back to my lefse and they finished up their chores (and did well!) then sat down to occupy themselves. Grace did her latchhook for awhile then asked to paint. Normally there is no way, NO WAY I ever let Grace have paint. But I thought I would see how it went and - it went well!

After awhile Beautiful and her husband dropped off Bella for me to babysit  so they could finish Christmas shopping (2nd time I have gotten to babysit in 5 weeks!!). JJ had been playing his video game time during that time and he was told his time was up - also no drama. Bella slept another 2 hours while I finished Lefse. Then she woke and I let the kids take turns holding her while I worked with the other kids making Puppy Chow and Granola. It all went well.

I think I was tearing up every 15 minutes as I just stood there and contemplated how utterly different the day was going than every other Saturday in 11 years. I was considering what life could have been like if we had diagnosed her earlier. I was worried that it wouldn't last. I was wondering what her future will be like with the statistics that I know about this disorder. Then I forced myself to just exist in the present and enjoy the gift of today being trauma free.

We watched a movie together all cuddled up on the couch. (Silver Bells is a sweet Christmas movie about the Salvation Army). Grace did get a little frustrated that Bella fussed every time Grace held her, but handled it ok. Beautiful and her husband got back and we decided to order pizza, have a fire, and watch another Christmas movie.

I reminded the kids that today, with no drama every 90 seconds, I was able to actually get a ton done so there was time for fun. We rarely have down time together because I am constantly sending someone to their room for fighting, or telling them 100 times to get their chores done, or whatever chaos is happening at the moment.

But it was just...calm...

Sunday Superman and Faith had their school program and we actually let Grace come with us. Normally she would be left home with very specific instructions to Buddy on what she could and couldn't do and his eyes had to be on her constantly unless she was in her room, etc. But, we thought we would see if she could handle a high stimulation situation without getting over-stimulated...and it went well too! Monday she was given news she didn't want to hear and cried for 30 minutes, but she did not fly into a rage like she would have before. I just cannot believe the difference!!!!!

I wanted to be sure to blog about this. I don't want to forget this week. I don't want to forget this weekend and forget what a difference is happening right now. I don't want to forget the blessing that we are experiencing right now. Everyone is calmer. Everyone is happier. We haven't had any other emotional chaos on the home. We have had another major decision we have had to make that is changing our lives, but that is for another blog post...

We still have a long road ahead of us, but I am so thankful for a diagnoses and a treatment plan.

I am so thankful for hope:) God has been present with us throughout this journey and I am trusting His timing and sovereignty in this situation.

Nightmares and Migraines

Last night someone had asked me about my headaches and what I had done to help them. It occurred to me that I haven't had one in months. I used to get migraines frequently. I changed food, hydration, supplements, massages, chiropractic adjustments, and all kinds of things to stop the headaches. I also noticed that they were worse during allergy season. I don't get typical seasonal allergy symptoms at all, but the migraines were much more frequent. Tylenol didn't touch them, but if I took an Aleve Cold and Sinus it was gone in hours instead of days. Odd (what about me isn't odd?!?!) Anyway, I was doing pretty good for awhile but I have one starting this morning and am reminded what the biggest culprit for me is..

not enough sleep.

JJ was sleeping so good for about 6 weeks after we got the hot tub. He would get in it every evening and it was helping him with falling asleep and sleeping through the night almost every night. It think he only got up 3 times in 6 weeks. I had such refreshing sleep, no headaches, and loved it.

Of all of the sleep problems that we have dealt with with him, now it is nightmares. He used to just come into our bed, cling to me for safety, and fall right back asleep. However, now he is having nightmares many times a week, and at least once a week they are apparently so scary that he comes to our bed, sits up, and refuses to fall back to sleep. This morning it was 3:30. Thankfully I have learned that I can do the "dual attention stimulation" that is used for EMDR and can have him back to sleep within 30 minutes. If I don't he will literally stay up the rest of the night asking when it will be light out so he can get out of bed. Nightmares are such an enigma to treat. He used to beg me to pray every night that the nightmares would stay away, but now tells me not to because "it doesn't work." I am sad for him.

I thought maybe he was just claiming having a nightmare as an excuse to come to me at night, since I was really insisting that he choose to stay in his own bed all night. So when he would come in I would say "if you need me come and get me, you don't have to claim to have a nightmare to come and get me." But the way he comes in with his body shaking, clinging to me, and refusing to fall back asleep? I don't think he is faking it.

As my Dad always says, "if it isn't one thing, it is another!"

So, in other news. Grace has been great this week. She has not had a meltdown since Monday. That is the longest ever! She admits that she feels happy. She actually smiled yesterday before school and giggled once. I felt so much relief yesterday that there wasn't this horrible oppressive "yuck" of her behavior (or anticipating her behavior) that I did a bunch of cooking and made plans to do some fun Christmas cooking with the girls tomorrow while my husband takes Superman to an all day basketball tournament far away. Normally I would be dreading such an experience, but I am actually looking forward to it!

What a huge difference a week makes! I thank God for the psych nurse and for this medication. The medication does make Grace have a tummyache - but hopefully that will end soon. I am using peppermint on her stomach to help with that. When the psych nurses' LPN called me last week to verify the appointment I had said to her, "we are hoping for miracles!" She responded with, "we will pray for miracles!" I was encouraged by her comment to someone she had never talked to before. Then, yesterday I had to talk to her about insurance. I told her things were going well and how thankful that I was for them. She said, "we will keep praying and praying for Grace. You guys have been through a lot." What a sweet reminder that God has placed His people all around us to help us - even where least expected:)

I will have the kids alone all day tomorrow due to Superman's basketball tournament. I see that as a test of how it can go. Normally I dread those days and retreat into myself to shore up and prepare for chaos and venom. But I am hopeful that it may actually be an enjoyable day with some relationship building:)

It would be better if I was well rested for the experience... hopefully JJ doesn't have any nightmares tonight!

Nightmares, Migraines, Adoption Issues, and a Big Answer to Prayer:)

Nightmares:
As I have talked about ad nauseaum, JJ is not a good sleeper. At age 6 1/2 he still does not sleep through the night consistently. He falls asleep between 11 and 12. He needs me holding him, at least right next to him, to fall asleep. The nights he falls asleep in my arms are the nights he falls asleep in under 30 minutes instead of in 2 hours. And there is no rhyme or reason why some nights he makes it all night long and some nights he is back in our bed frantic to be plastered against my side within an hour of me carrying him to his own bed. We have tried all kinds of things, nothing works, and at this point I just go with it.

One thing that he does talk about a lot is having nightmares. He won't tell us what they are about so I have been thinking that he has been using that as an excuse. He has asked for over a year for us to pray for him at bedtime "so I won't have bad dreams." Then he accuses me of not praying "right" and asks "why don't your prayers work?" when he says he continues to have bad dreams. He even has Beautiful pray for him the nights she is still here that late as an extra layer against "bad dreams" (since mine don't work;) Again, I have thought over time that this is an excuse to just not want to sleep by himself...

...but last week I had to wake him in the morning to get to an appointment (otherwise I would never wake him - that is a nightmare for both of us...). He was still in his own bed. I will never forget the look of utter shock on his face when he first opened up his eyes and when he blurted out, "I didn't have any bad dreams?!?!" So, that both confirmed to me that he is not faking about the nightmares as there was no way that he could feign that shock the second he woke up, and it broke my heart that he was so surprised that he wasn't woke up in terror from a nightmare. I don't know how to make this better, but we will continue to pray over him:)

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Migraines:
I have struggled with headaches for over 20 years. I didn't know they were migraines until just over a year ago. I was under the mistaken assumption that in order for it to be a "migraine" I had to vomit with it. Not true. Since then I have been systematically trying to figure out what triggers them. I go to the chiropractor once a month. I get massages regularly and had to bump it up to every 3 weeks at one point. I work on hydration. I avoid certain kinds of food noticing that after eating at certain restaurants it was bad. I can't avoid taking my children out in public  (just kidding...sort of;) I use Progessence Plus every night and when I got to the right dose it dramatically reduced my headaches. I take a ton of supplements and vitamins. When I feel one coming on I try to take 2 Tylenol and sleep (if possible).  All of these interventions have helped. However, a couple of weeks ago they started coming back stronger than usual and more frequent. Last Sunday I came home, took Tylenol and napped and the migraine was 10 times worse when I woke up. As a last ditch effort I took an anti-histamine since everyone else in the house was have allergy symptoms and I was desperate for it to go away. And it did! I have not been a person to suffer with allergies - congestion, sneezing, watery eyes, etc. But, when I think about when my migraines are worse it is in the fall and spring. Huh. So I took an anti-histamine every day this week and it was better. I woke every morning with a headache starting and it would go away with the anti-histamine. I am very thankful!

The one trigger that consistently results in more frequent migraines that I can't do a single thing about is...frequent interrupted sleep. Sigh...

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Adoption Issues: JJ's mom recently had her 3rd son since JJ has been born. JJ has enjoyed seeing pictures of him and it has started him to talk more and more about his birth family. He has asked to meet her and we are trying to  answer any questions he has. He keeps walking around asking each of us many times a day "what is your real name." I hate that word "real." I keep telling him that everyone has their "real" name (the word "real" is a pet peeve of mine so I keep saying "birth name." Of course, asking him to stop doing something means that he does it 1000 times more...) It really throws him for a loop when his, Beautiful, Buddy, my husband and I all have the same name that we were born with but the other 3 don't. He just can't quite understand the logic of all of that - which is probably why he keeps asking...and asking...and asking...

Anyway, about 3 weeks ago was when this was starting and I asked Superman and Faith how they felt about JJ talking about his birth family, having contact with them, and the idea that he may get to meet them when that was not something they would get to do. Superman responded honestly and actually had some good questions. Most of the time he avoids adoption questions so I was thankful that he felt safe enough to do that. That is one good thing of JJ talking about it so much, Superman has learned that it is not a taboo topic even though we have always told them they can ask anything they want to;) Anyway, I told him that right or wrong I tend to error on the side of answering questions openly and that I never want the kids to feel like there was a time that they felt I held information back from them so if he wanted to know I would share what I knew (in a responsible way of course). The conversation got pretty tough and a lot of questions were asked. I was glad that he felt he could ask and receive honest answers. I was thankful for Superman opening up more during that conversation.

But...something else beautiful also came out that that hard conversation...

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Answer to Prayer:
I have asked you to pray for our girls, and specifically Faith, in the past. Things have been tough for a long, long time with them. We are starting to see some maturity with Grace. She will actually say now that she needs to go to her room to calm down...about 15% of the time. But it is better than 0% of the time;) Bedtime is getting better. She admits that when she goes to bed earlier she is happier in the morning. That right there is HUGE! Over all there is a maturing and we are thankful. Of course, as I typed that she had a tiff with her brother. But at least she only growled and didn't do her normal tantrum. So, progress!

But, things with Faith have had us very, very concerned. Her behavior has been far more intentional and calculating than Grace's impulsivity. Things came to a head March 3. We did an intervention with a group of people on March 6 where she had to publicly admit to them what she had been doing. They prayed over her. She knew that the next step that we were considering was sending her to boarding school. The next couple of weeks I had several situations with her that gave me increased hope. Times when she came and volunteered about a struggle - both before or after (but before she was caught) it happening. Then came that adoption conversation I wrote of in the last section. It totally sent her into an emotional tailspin.

You may think me cruel, but I was finally glad to get some real emotion out of her. Finally it seemed we had broken through to some of the core yuck and she was getting genuine. I had her do EMDR about that and it was a beautiful and cathartic experience for her - (she actually talked about her feelings about her birth mom). And a bonding experience for us. It has "only" been 3 weeks since then but she is doing great! It is the first time I have seen her genuine and authentic with us. She just "feels" more relaxed and at peace. I feel more relaxed and at peace. She has messed up a few times since then but it as been more of what to expect from a typical 10 year old than a 10 year old with attachment/early trauma issues filled with rage/resentment/bitterness/fear/guilt/shame/etc. I am not so naive to think life will be a bed of roses from here on out, but it is the most peace we have felt in the house for years. Years.  I don't have to feel like a prisoner in my own house just to keep the kids in check or fear of what they may do in public. Ok, well, as much fear as there used to be anyway;) I can trust Buddy or Beautiful to babysit and not wonder what will happen. She is earning back privileges she hasn't had for 18 months and not misusing them.

It is good:)

Thank you for praying for our family and for Faith. She is precious and I feel like we have broken through the outer shell and can finally enjoy the real her.  God is good, and He is trustworthy:)

My Current Crazy Life

Uggg, so much!

My mother in law is in the hospital again.  She was in for 5 days with pneumonia, then got out for 3 days, and is back in with a blocked/kinked small intestine.  She is in a hospital 90 minutes away this time.  Due to the diabetes, dementia, and sun downers her treatment is very complicated.  She is non-compliant.  She is delusional.  It is sad.  My husband wants to be there with her, but she doesn't know who he is (thinks he is her husband) and that is making her very agitated and it does not help. It is hard to know how to proceed.  We are just agreeing to what the specialists say at this point.  Her veins keep collapsing so they are putting in a picc line right now.  Hopefully she will not pull that tube out too...

So, in addition to that craziness, I had agreed 2 months ago to be the camp Psychologist for Royal Family Kids Camp this week.  That means that my husband won't get the support from me that he needs this week, and I won't be home to help with kids like he is used to W - F.  We got last minute approval that 2 of our kids get to go to Royal Family Kids Camp, a HUGE blessing, and that should help his stress level.

I am stressed about camp.  My idea of being outside is to go hiking for a short period of time, or opening the windows of the house lol!  I am also known, as I have told you before, as the "fun sucker."  So "camp"  well, the idea of it just stretches me beyond any area of comfort.  But, I am excited to teach the counselors/staff about TBRI and how to work with these kiddos differently so I am doing it.

Grace did tolerable for 3 weeks!  And the past 4 days she is dysregulating again.  I am SOOO glad she is going to camp this week...  Even before she was 2 we noticed the cyclical nature of her dysregulation.  I have not found her symptoms to be consistent with bipolar disorder, but we are about ready to try anything...  It is extremely hard to live with her.  I feel terrible for the trauma the other kids go through.  Beautiful is ready to be away from it (in all honesty, we all are).  Very ready.  That breaks my heart.

Right now she is screaming at me such vile and venomous things as she has been put in her bedroom until she calms.  She argues about EVERYTHING.  She threatens.  She is exasperating and exhausting.  We really need prayer for her to be healed and for us to be able to endure her/enjoy her.  There are no words to explain how difficult things are with her.  She can be so precious, and in public she never displays the full extent of her venom.  But then...

JJ is doing AWESOME!  He loved music therapy last week!  He clung to me and did engage as long as I was right there.  He actually yelled out his name right away when they were doing introductions!!!!  He is doing so much better with talking.  In fact, we have had to laugh several times in the past 2 weeks as we have, for the first time, wished that he DIDN'T talk lol!

My husband and I took Beautiful (and JJ) to her wedding dress fitting and then to Red Lobster for lunch.  JJ loudly announced his need to use the restroom (not in those nice words) and has done so several times in other public venues (like church).  We try to keep our mortification to a minimum and just be pleased he is speaking his mind, but sheeesh!  Aside from that we had such a precious and sweet time with Beautiful.  61 more days and she will be married and gone.  I try not to think about it...

There was a car accident next to our house this week and I was getting everyone ready to go to the pool.  JJ went outside and went right up to the police office and talked to him (while the guy was trying to do the police report...).  We have never  taught him to beware of strangers as he is scared of everyone, so when I talked with him afterwards about that he just kept asking "why" he shouldn't go up to strangers and talk to them.  He has been priding himself on waving at everyone on our walks and says every time, "Mom!  I waved at someone!"  It was hard to figure out how to tell a kid who has been terrified of strangers, to be afraid of strangers now that he is getting more bold.  I am still not really sure how to address it that won't put him back into his shell.

JJ loves to move his body to music and get really wild.  Last night we went to a dance and he danced for hours.  It was so fun to see him be that free with strangers!!

He is also getting amazing with articulation and word retrieval!  I am shocked with the words that he is able to retrieve.  For example, twice in the past week I asked him what a bunch of colors were...and he retrieved the words spontaneously and correctly!  Praise God!

With this new found vocabulary explosion (again, he had it receptively, now it is expressive) is also some serious independence asserting itself.  He sees Grace rebel against us 24/7 with words and actions and he emulates her.  He spews the same words at us.  He is too smart and thinks up things to push limits, some of which Grace never even thought of.  Sigh...

For example, as I was typing this Faith came running in and told me that JJ was stuck up in a tree.  I went to him and asked him why he was in the tree, he said he was chasing a snake and got stuck and was scared (impressive word usage!).  But, when I firmly reminded him that it was good he was scared as he was not to climb a tree as he could fall down and get hurt he said, "why Grace climb it?!?!"  I reminded him, again, that Grace is also not supposed to climb the tree.  He doesn't understand why he isn't allowed to do what he sees his 5 siblings do, whether their behavior is due to them being older...or due to their rebellion.

Wedding announcements went out!  That really makes it real...  The guest list was my most stressful part of this process (thus far).  We have so many people on the list that our church will not hold them all.  It was hard to figure that part out hoping not to offend people.  But, it is figured out to the best that we could and we will just trust God with the rest:)

Well, I am off to try to enjoy my last night of rest before the next 5 days of chaos.  I look around and think I should get the bathrooms cleaned, the laundry put away, etc before I am gone.  But then I think...naaaaa.... I will just hunker down with the kiddos and my husband instead;)

Update on Grace: The Good, the Bad, and the Struggle to Not Become Hopeless

ADHD is a very disruptive and difficult disorder.  I have often mused how the criteria that I use when I diagnose people with ADHD are so sterile and concrete.  Living with a person with ADHD is chaotic, overwhelming, maddening, and...at times it feels hopeless.

I have talked with several people over the past week, and read a blog post from a sweet friend, about the topic of hopelessness.  I have been struggling with it for years and certain events occur that bring it more to the fore.  I am usually able to beat it back eventually, but lately I have been hit hard from a variety of directions and hopeless I have been for awhile.

6 weeks ago we decided to put Grace in public school because her oppositional behavior was constant (at least 95% of the time) and it was preventing her from learning and the other kids from learning, or even feeling safe or calm in their own home.  It has taken a bit of an adjustment but we will all tell you that we are so thankful that we made this decision.  Grace LOVES, LOVES, LOVES going to school.  She loves that she gets to play and be with people.  I don't know that she is academically improving but she wasn't here either.  We will see what the standardized tests indicate at the end of the year.

After 6 weeks, life at home during the day has become remarkably...calm.  The house is quiet.  Kids actually venture out from their bedrooms and join everyone else to sit quietly at the kitchen or in the living room to do their school.  The constant tension is more intermittent (we still, of course, have JJ to content with).  It is what I hear from other home school moms that a day actually looks like.  I am struggling to remember back to when we just had Beautiful and Buddy when I actually got to engage with the children and do projects and fun things rather than just discipline all.day.long.  I have been finding the energy and motivation to deep clean the house and take pride in my home again.

Two weeks ago Grace was...I am not sure that I can even put words onto what she gets like.  No one would believe me if they just saw her "public" behavior.  She is a different child at home.  The easiest way to talk about it is pure contrary and oppositional behavior at every moment.  There are times of reprieve, but they last minutes to a couple hours and are not daily.  We realized at the end of a terrible week with her that we had run out of the supplements that we use for her neurotransmitters.  I didn't realize we were out until we were out, then it took time for them to ship.  She has improved (meaning longer stretches of more compliant behavior) in the past week since they came in.  Last autumn we increased her ADHD medication.  It has been 4 months and there has not been one single noticeable improvement.  However, there is clearly improvement from the neurotransmitter supplements (and she is equally terrible if she doesn't get her ADHD meds - it is just that the increase in dosage provided no decrease in behaviors).

The day after she got back on them she and Superman were playing "Ninjas" while I was trying to keep them in the basement with me while 3 kids were still doing school upstairs.  Apparently in playing Ninjas, Superman caught Grace and went to put her in "jail" in our bedroom.  In the tussle they tripped and he landed on her, but she landed against the metal bed frame and ripped a gash in her lower back.  I yelled for Beautiful to help who stopped the bleeding while I called the clinic (thankfully it was 5 to 5 and they were still open!) and went to deal with Superman.  Superman is an extremely sensitive child and he was hysterical.  I found him in his bedroom rolled into the fetal position sobbing and repeating over and over that he had hurt his sister.  I just held him, made him look me in the eye, and repeated over and over that I loved him and that he was not in trouble (although they know not to play in our bedroom the accident could have happened anywhere).  I didn't know what had happened then but I knew there was no way that Superman would maliciously hurt her...or anyone for that matter.  I knew that Superman would retreat further into himself if I didn't handle that immediately.  So, after 5+ minutes of reassuring him we got Grace to the clinic and got her 10 stitches done.

The next day she already popped one stitch.  By Wednesday it was 4.  Thursday we went to the clinic to see what could be done as she kept unraveling the stitch by not being still.  Ha, this child cannot be still.  When she next gets stitches it will have to be tied off each stitch.  Her last 7 stitches in her toe months ago only had 3 left when we went to have them taken out.  Sigh...

We did that in the morning, then took her to school in the afternoon.  When she got home she was hyper and wanted to ride her bike.  We told her that it was not OK for her to ride that day since the steri strips had just been put on a few hours before (Grace on a bike is anything but sedate and calm).  She was not happy with us and just ratcheted out of control.  The things she screams, the constant back talk, the putting her fingers in her ears to not listen to us is maddening.

So, we did something we had not done before.  In the middle of it, my husband and I retreated.  We fed the children, separated them all, apologized to Beautiful and left her in charge, and left.

We were utterly hopeless.  Nothing that we do seems to help.  All of the money, time, new ideas...nothing seems to make it better.

We went out to a new Mexican restaurant that we had not gone to before but had heard good things.  And we talked.  I don't know that since having children we have ever gone out to eat (due to where we live going out to eat means driving to the next town) and just ate and come home without running errands.  But that is what we did.

We talked through her behavior.  We talked through what we have tried before.  We talked through what we can attempt in the future.  We talked through what is realistic given everything else that we have to do.  And we came up with a plan.

At a minimum it gave us a glimmer of hope that maybe this time it will be manageable.  Time will tell.  We came home and held a family meeting telling everyone what the new plan is and to ask them to help us implement it.  It will require the help of the other kids.

Essentially, the new plan has to do with frequent (every 30 minutes) rewards for not opposing us in the prior 30 minutes and hourly intentional sensory stimulation. Consequences mean nothing to Grace, as every parent of an ADHD child will tell you.  ADHD is a disorder of time.  The past (thinking, "oh, I got in trouble for that before I shouldn't do it again"), the present (they are so impulsive that they do what they want while thinking it - not gap time to consider if it is right or wrong) or the future (oh, I will lose that if I don't obey) are time concepts.  So, we will hope that 30 minute rewards will be effective.  We are not even 24 hours into it and, so far, we have behavior from her that is less than the type that makes me want to pull my hair out and beat my head against a rock wall.  She is outside riding her bike right now.  Her steri strips are already ripped off.  But, this child just cannot be still and the sensory stimulation keeps her calmer so ugly scar or not (it is healed shut, just not pretty) it is what it is.

We hope that this will help.  On the one hand we keep wanting her to get older to mature and get some control over herself.  On the other hand I work with a lot of ADHD kids who are older and it is not better.  I struggle with not getting hopeless while imagining her at 10, 12, 14, 16+.  I keep reminding myself that I have to stand before God and giving an accounting for what I have taught her, not what she has actually learned.  That is between her and God.  But God sure did give her to us for a whole lot of our own sanctification work to be done and not for calm and ease lol!

She is a constant reminder that our Hope is to be in Him and not in anything in this world.

Occupational Therapy Update:)

I am pleasantly surprised that the occupational therapy interventions with Grace are producing pleasing results.  In the previous post (the one with all of the bunny trails that is really, really long and no one probably read to the end) I wrote about some of the specific interventions we are to be using with Grace. This post will be about what we are seeing.

ADHD and sensory issues are such multi faceted issues.  Even though I had read about and had training regarding ADHD I still did not know enough about it until I got to deal with it day in and day out.  In 7 days I get to attend a day long training for Psychologists by the world renowned expert on ADHD.  I am curious how it will go:)

For so long the primary issue with Grace was hyperactivity.  For years we just tried to calm her down enough that she would not be hurting herself or others.  We tried all kinds of interventions and finally used Ritalin.  We did get effects from other interventions but the Ritalin finally slowed her down to manageable levels:)  We did an increase one time, but with dietary and nutritional changes we were able to reduce it again.

At that time, once she was a bit slowed down, we noticed how bad the concentration problems were.  She was in Kindergarten and her lack of ability to attend to the lessons was causing her to really lag behind.  We were happy to keep her from hurting herself, others, or wrecking something - forget about math facts and reading!  In the spring we switched her to a different medication, Vyvanse.  That medication, administered below the recommended start dose, helped to control both her hyperactivity and poor concentration.  She made significant strides in school over the summer.

The 3rd issue we have with her is impulsivity.  She never stops talking, loudly, without listening for answers.  She is seeing something interesting and running for it without regard to it potentially being dangerous or belonging to someone else.  She is ever seeking to pin blame on others and not be found at fault herself.  We found that this also improved with the medication change.  Today we tried a no-med day to see how much of the improvement is from the meds and how much from the occupational therapy (OT).  The main problem from the day was impulsivity again.  Constant talking and inability to respect others' boundaries led to many sibling conflicts that we have enjoyed not dealing with as frequently (as in, a good day is perhaps 1 - 2 conflicts an hour).

Those issues are primarily dealt with by the medication.  So, you ask, what else is there that the OT could even help?  The mornings and bedtime have been the worst times for Grace.  She wakes up at the crack of dawn, wakes up her sister who needs more sleep, wakes up the house, and essentially bounces around like Tigger creating chaos before people can even open their eyes.  Bedtime usually involves at least 30 minutes of out of control screaming, if not longer, that means that no one else can be going to bed.  She doesn't stay in her room (much less her bed) and is verbally and physically out of control.  90% of the time we have to remove her sister and have her sleep in her brother's room (in JJ's bed, which means that JJ is still in out bedroom).  Her waking and going to sleep have come to be the most dreaded part of my day. 

Grace potty trained very quickly at 21 months (I am glad that was easy lol!)  She loves to go to the bathroom...and wash her hands.  We only use bar soap (which is healthier anyway:) as she will go through a pump bottle in a day.  She is forever playing in dirt, sand, water, anything messy.  She spins and spins and spins - preferably upside down.  She sits upside down during meals - hitting her head on the table for added drama when told to sit up.  Superman has to be placed between Grace and Faith at the table and in the van as he is able to defend Faith better.  She picks the drywall mud off of the wall.  She is the messiest eater alive as she plays in her food rather than eat it.  When told no, well, we say it to her countless times a day but it is almost always a battle.  She is smart and uses it to be sneaky.  If she sees it, she wants it and she goes for it.

Occupational therapy has reduced most of these issues!  She is sleeping at night without screaming!  Faith actually gets to sleep in her own bed, and Grace is VERY CAREFUL about not waking her in the morning when she gets up.  Just so you really get the effect, I said that Grace was CAREFUL!  We have only had to removed Faith from the room 2x in 3 weeks and this was not due to screaming!  Grace has always been very fearful of the dark (or, more realistically, she wants the closet light on so she can play with her toys since it takes her awhile to wind down and fall asleep).  This has hindered Faith from falling asleep as well.  Last week Grace announced to us that she wanted the closet light off and has done this successfully!  She has a long history of nightmares, and has only had one in the past 3 weeks!  Then, when she came to us she came QUIETLY so as not to wake JJ (it used to be that she would charge into our room numerous times during the night as loud as she could be - she now seems to understand quiet) and was quickly calmed and able to go back to her bed.  It is quite amazing! 

In my mind I am trying to categorize and conceptualize what is really going on with her.  We have nutritional issues with digestion that we are still in the process of correcting.  We have a ton of food allergies - that we are dealing with nutritionally and via diet.  We have ADHD (hyperactivity, concentration, and impulsivity) that has been adequately controlled with medication at a minimal dose and very watchful eyes of my husband and I who try to ward off any "dangerous" triggers.  And now the issues that I thought were part of ADHD that seem to be sensory processing issues are being addressed with the OT.

I am so thankful for being able to wake with the sun and not a child screaming or jostling me or slamming doors or running all over the house waking everyone else.  I am SOOOOO thankful for bedtimes that do not include out of control screaming.  I am so thankful that the girls are sleeping well in their room...and maybe we can have JJ in he and Superman's room...perhaps by the time he is 3?  I am so thankful that there are fewer injuries to siblings from her impulsiveness.  I am so thankful for calmer days where she is not nearly as impulsive spiraling out of control where the only intervention is to have her scream in her room until she exhausts herself before we can reengage her.  Now she is better communicating to us and having a more quiet spirit.  She really likes the interventions (like brushing, being wrapped tightly in a blanket and rolled on a big ball, etc) and will ask for them when she is feeling out of sorts.  I dare say that life, at least as far as she is concerned is a bit calmer and..quieter!  I know we are only 3 1/2 weeks into the interventions (messy eating issues are next!!!) and we have months and months ahead of us.  But, we sure are enjoying what we are seeing so far:)

Occupational Therapy: how it applies to our family and a few bunny trails:)

I am writing this post not to bore you with details of our lives, but to encourage those out there who may be dealing with similar issues and looking for some options.  I did not know of the benefits of OT and wish we could have started this several years ago... 

I have come to understand and accept that most people do not understand most other people.  There are so many issues in this fallen world and we just don't have the time to get to intimately know all of the ins and outs of everything.  Unfortunately that usually breeds distrust and misunderstandings of those things which we do not understand.  It has been a painful journey for me to know that people do not agree with much of what we believe in and do, but we continue to forge ahead.  When we first started the adoption process we were trying to adopt from Liberia, West Africa.  Most of the people adopting from our agency at that time were on the same closed group.  We encouraged and supported and prayed for one another.  It was a precious connection.  When we were not able to bring any of our 4 kids home from Liberia, and other things happened we no longer were on that group.  I desperately missed the connection.  Foster care (3 of our adoptions) does not promote strong connections between foster parents and the foster parents themselves vary so much that connection is difficult.  I have joined several yahoo groups specific to our kids' needs such as one on home schooling adopted kids, trouble with reading, dyslexia, etc.  I was very excited (although also saddened) to be asked to be on a new group of the same women I had connected with 6-7 years ago who are now, unfortunately, dealing with all of the struggles of parenting adopted children.  The struggles are many.  Adoption is still VERY worth it.  However, adoptive parents NEED support (and NOT to be told, "well, you chose this") and this is a way for us to get support.  I appreciate fb and technology that even though there may not be people geographically near us to support us, we are able to receive support from around the world:)  People who are looking into adopting need to know what they are about to experience.

Via one of these groups one the mom's started talking about some of the issues that I see with Grace in particular.  (I don't wish to not include dad's, it is just usually mom's who are doing the leg work and seeking connection/relationships for support lol!)  That confirmed what I had learned last fall from Karyn Purvis, PhD and TBRI (yes, I know I promised a year ago to start blogging about what I have learned.  I promise that I will blog about it, I have the posts running around my brain, I just have not done it) that all kids who come from trauma need to have full educational, OT, and PT evaluations to assess their needs and strengths.  I am tired of the people who tell me that if we just disciplined more we would have better results.  I am tired of the people who say we don't discipline enough.  I am tired of people not understanding.  I am thankful for the One who always understands:)  It is so, so much bigger than just discipline! So armed with new hope I took Superman and Grace in to pediatric OT and PT therapists for evaluations. (Bunny Trail: medications have helped, the allergy testing/treatment/weird stuff has helped, the nutritional stuff has helped, different disciplines have helped, TBRI has helped...I think that each of those issues are just dealing with a different part of the elephant and this is another part of the elephant).

I had always thought that Occupational Therapy was what people did when they had a stroke or a accident and needed help with some type of fine muscle skill, and that PT was about gross motor skills.  I was wrong!
Both of the kids sailed through their general OT evals.  Grace did very well on her PT eval. Superman came back with some PT areas to work on - primarily core muscle issues that contribute to his "floppiness" and lack of endurance.  Grace, however, was found to have many sensory issues that can be helped through Occupational Therapy.

Permit me another bunny trail/soap box.  One thing that the vast majority of people do not understand is the utter vital role of prenatal health.  People will constantly tell us "Grace came to you at 4 months though, right?" as if getting her so early, or getting JJ at birth for that matter, somehow means that since we have had them all of their lives and have been responsible for their "nurture"  we are at fault somehow for their issues or that we are making their issues out to be bigger than they are.  Prenatal exposure to drugs and alcohol are not the only prenatal elements that can negatively impact a child.  What the mother eats (or fails to eat), antibiotics that she takes, a normal and stress free pregnancy but a traumatic delivery/NICU, and cortisol levels from her stress levels can all have the SAME IMPACT AS DRUGS AND ALCOHOL on the developing baby.  Just take a moment to let that sink in!  It is a wonder to me that any baby turns out ok!  Only by the grace of God!  The impact is neurological one.  Many times it is permanent or at least requires intervention.  Three of our kids have prenatal exposure to drugs/alcohol.  The effects are very different in each child.  Then we have JJ who has no known drug/alcohol exposure but born to a mom who was very sick vomiting most of the time, did not gain much weight, had very poor nutrition, and had stress levels THROUGH THE ROOF getting pregnant with a 6 week old baby at home, no help from the birth father, a family who was condemning her, and, well, her lifestyle isn't great. Neurological insults abound.  And sensory issues are neurological.

OK, back on track.  Grace's issues are sensory.  Essentially she it utterly over stimulated by visual and auditory sensory feedback.  Isn't that the core of ADHD symptoms lol!  Conversely, she is totally under-stimulated in the areas of tactile, proprioceptive (deep muscle pressure), and vestibular (balance/inner ear) stimuli.  The under and over stimulation war against each other in her brain where it doesn't know what to be processing.  Also, when she is overstimulated in one area, she will gravitate toward trying to stimulate the other areas.

In practical terms, the ways that I have seen this are:

Auditory: Grace will cover her ears and not like sounds.  When she is in an area with many sounds she cannot discern what she is supposed to pay attention to.

Visual: again, when she is in an area with lots of visual stimulation she misses the forest for the trees so to speak. She is forever noticing what everyone else is doing rather than what she is supposed to be focused on.

Tactile:  Grace is the messiest eater EVER!  She is the messiest everything always!  She is always washing her hands and playing in water until her hands crack and bleed all of the time.  She is always chewing her hands, hair, etc.  She digs out the sheet rock mud from on top of the screws on her bedroom wall with her bare fingers.  She has ripped all of the wall paper border off of her walls, again with her bare fingers.  She is forever dirty playing in sand, digging in dirt, pulling apart anything she can find. She wants to fully feel and physically experience everything.  No personal boundaries?  Craves physical touch/tactile stimulation to connect.  She has a bed so full of toys that I cannot imagine how she sleeps!  She needs the "feel" of them and their textures.

Proprioceptive:  When grace is getting overstimulated she will stomp her feet or walk as if flat footed so it seems like she is stomping her feet.  The OT explained that kids like her have a strong need for keep joint/muscle compression so while she "knows" how to walk heel/toe stomping flat footed will give her sensory input that is soothing to her.  She is not just doing it to be rebellious.  I was worried she was going to blow out her knees!

Vestibular: another huge one for Grace.  When overstimulated Grace will spin in circles a lot (remember her first black eye??!), hang upside down off the couch/ottoman (2nd story railing of my parents deck), and swing/rock.  She much prefers circles to back and forth.  Again, when visual and auditory are too stimulated she will go to the 3 areas that are understimulated to self-soothe.

Whew!  We had the week of vacation between the eval and the first appt so I had a chance to just sit back and watch her behavior.  Putting a different framework on the "why" of what she was doing was so helpful! I was able to have hope that one day it will be better:)  The problem was that I still didn't have any tools to make it better as vacation is VERY stimulating lol!

Interventions we are starting:
First, I am to really think about all of her environment and her responses in terms of the 5 categories of stimulation that we are dealing with.  Second, I have been asked to do, as interventions, things with Grace that we have totally, totally, totally removed from our lifestyle due to the issues she has.  For example, can you IMAGINE her with PAINT!  eeee gads!!!  Ok, but I can do this...

Visual: we are to get a lava lamp, bubble maker, or fiber optic tree/something to give her something to look at that is visually stimulating but in a calming, methodical, and structured manner.  Meaning, it will keep her attention but keep her calm.  We are to have a place for her to go in the house that is visually calm.

Auditory: unfortunately there is not much that can be done for this sense other than graded exposure until she is able to handle it - and the use of headphone/earplugs.

Tactile:  this is the one that scares me the most.  We are to give her lots of controlled sensory input.  Playing in rice (beading string but she had to pull the beads out of rice to give her the tactile stimulation), painting (again, imagine me physically cringing!), playing in sand (same cringe!), fidget toys, play doh (arrrgggg!  the mess!), squeezing clothespins, sorting items that she finds in a bucket of beans, etc.  This one will take the most creativity and patience from me.  I was also horrified that I have been removing the very things that she has so desperately needed because of the huge messes that she makes (do you remember just for a moment what our bars of soap look like lol!)  Sugar free candy for oral stimulation.

Proprioceptive: We are to get a bean bag and have her lay in it, enveloped by it, with a heavy blanket over it.  Rolling over the top of a big bouncy ball (the kind you sit on), pushing against walls, sweeping, carrying  various heavier items, stretching, etc.  Anything that will give deep muscle stimulation/joint compression.  Wheelbarrow, bear crawling, jumping jacks, etc.

Vestibular: swinging, rocking, listening to/feeling drum heavy music (African or native American) where she can feel the beat.

Finally, we learned the Wilbarger brushing technique.  Karyn Purvis, PhD talked about this one a lot.  It is a mixture of brushing her skin with a soft brush alternating with keep joint compression.  Grace LOVES it, it relaxes her, and she gets to do this every TWO hours.

We have a schedule of what to do every 2 hours with her.  Even though this is a time commitment it will hopefully take up less time than the hours of screaming we get when she is overstimulated.  These techniques are supposed to help to sooth over stimulation and stimulate what is under stimulated so that she can regulate better.  We are ALL ABOUT having a better regulated Grace!!

I know this post is very long, for those of you who have read it to the end I hope it has been helpful:)  Feel free to ask me any questions that you may have about this, or you just read The Connected Child by Karyn Purvis, PhD or The Out of Sync Child by an author I can't remember right now:)

Allergy Journey Update

It has been awhile since I have updated about allergies.  We have been experimenting with a new intervention and wanted to hold off a bit to see if it was maintaining its helpfulness.  As I have talked about in the past we have tried a wide range of treatments in the past.  We have used chiropractic adjustments, supplements I have read about, traditional medical testing resulting in allergy shots for inhalant allergies and elimination diets for food sensitivities, traditional medication, UA testing with a biochemist to learn what the body needs in order to better process out toxins (that resulted in more supplements and dietary changes), and the current, very non-mainstream, procedure.

BACKGROUND:
We have seen improvement with some kids with some interventions and some kids with other interventions. 
Faith (inhalant allergies) improved at the beginning with allergy shots but about 2 -3 months into it she regressed back to terrible congestion.  It affects her sleep and is affecting her concentration more and more.

Grace (food sensitivities with some inhalant along with ADHD) improved initially with DHA and probiotics but it was inconsistent.  The elimination diet helped initially from the traditional allergy physician, but she was sensitive to so many things that we could not maintain it well.  That told us, however, that food allergies definitely play a part in her ADHD issues.  In sheer desperation we finally put her on an ADHD medication and we keep it as low of dosage as possible.  That has been helpful but we worry about the long term effects of it.  We then started the biochemist process and that has been very helpful.  We have learned that her kidneys and liver were not processing toxins, and have worked to improve that.  We are improving her digestive processes.  This process, coupled with the ADHD medication, helped behavior noticeably.  However, as her behavior lessened we discovered just how pervasive the concentration/focus issues were for her.

JJ's issues are inhalant allergies (although we are learning there are some food/digestive issues too) and they were not helped well by anything that we did.  He developed RSV 12 months ago after battling congestion since he was born.  He was hospitalized for for hydration.  Since then he never went longer than 6 - 8 weeks before being on another antibiotic.  His congestion doesn't drain well and then becomes a sinus infection.  He has a minimal appetite when he feels this way (understandably) and gains weight one month just to lose it the next.  The biochemist supplements  were very difficult to get into him, but did increase his appetite some.  We quit them for several months due to the fight of getting them into him.  When we went to Mexico we found that he breathed NORMAL for the first time.  We came home and bought a $900 air purifier that was very effective for in house allergens...until the hot temps made the pollen outside explode.  At that time he got very congested when outside (how can one avoid being outside lol!).  We started the supplements again (just 2 - Lymph and Soft Tissue) with a strong effect.  He actually likes those mixed in cranberry juice as long as the other supplements aren't in it:) 

THE PRESENT:
We were getting ready to pursue the traditional skin testing for JJ and weekly shots.  A friend suggested this alternative.  Then two other people from different "circles" for me suggested this alternative as well.  To say that I was reluctant and skeptical was an understatement.  It involves "technology" that also includes muscle testing.  I really don't like muscle testing.  I stay far away from muscle testing.  I see absolutely zero science behind muscle testing.  In fact, I am deeply concerned for spiritual issues related to muscle testing.  However, very reluctantly, we thought that we would try it and see if we could make one last ditch attempt to avoid weekly shots.  We prayed a lot...then we took the plunge.

We have had a total of 9 treatments for Grace and JJ, and 6 for Faith to date.  Supposedly it is one treatment per sensitivity - forever.  No going back for many treatments for the same thing, etc.

Grace: Wow.  We are seeing huge improvement in her focus and concentration.  Have we stopped the ADHD medication? No. Some days I try 1/2 to see how it goes.  Her digestive process was also "treated" and we are seeing additional improvement with that. 

Faith:  Wow.  Her constant congestion is improved.  She is still congested and we can hear her breathing all of the time, but the sneezing "mess" is gone.

JJ:  Wow, wow, wow.  Inhalant allergies:  Last year at this time if we took him outside in the stroller for a walk, etc he would not sleep that night due to the congestion.  He now sleeps through the night at least 6 out of 7 nights. Last night was even 11 hours even after being outside for hours playing!!!  He and Faith have not had any nebulizer treatments at all when last year they were daily treatments. No more sneezing/runny nose.  No more constant coughing.  I can still hear him breathing but it is about 50% of what it was.  He has gained weight for 2 months in a row.  He actually sleeps deeply for many consecutive hours rather than waking every couple of hours and needing to be held to fall back asleep.  He has not been on an antibiotic since right before we left for Mexico in February. 

Food issues: He is eating like a champ.  That was almost instantaneous when his digestive issues were treated.  His main source of nutrition has been raw milk since he will not give up the bottle and won't eat much.  He will not eat a WHOLE banana whereas before he would spit out one bite.  The foods he is eating is increasing.  He will eat an actual portion of food rather than just a few bites.  He actually gets "hungry" and asks to eat.  One weird thing that makes no sense to us is that he will actually drink cold milk right from the fridge now.  That was also instantaneous.  We have been warming his bottles for 20 months or he just would not drink them.  All in all we are very impressed with this. too.

Fear issues:  While JJ has been with us since birth, he has a very heightened fear response similar to a person with PTSD.  Hence the constantly clingyness, total fear of strangers, and our inability to leave him in church nursery or with babysitters.  While we still cannot do those things, overall it is very, obvious to us that his fear response is significantly diminished.  At the home school conference we thought since he afraid of strangers he would stay right with us like EVERY OTHER social event we have been to.  Ha!  He delighted in running off and checking out fun things his eye level as long as people did not engage him.  Not fun lol!  He will go into nursery and actually play with kids now (as long as we DON'T leave!) whereas before he would just cling to us in fear.  He has actually even smiled at a couple of strangers!  I have even stopped the supplements for the past 3 days to see if we can get him off of those altogether while maintaining the gains.

Time will tell if these improvements are long-term.  However, we are very encouraged and excited about the current status of things. We understand that many of our kids' issues are due to prenatal insults and thus the neurology of their makeup cannot be changed.  However, we also strive to help them be as healthy as they can be with the areas of their lives that can be changed.  We are very thankful to God that He put people around us to step up and tell us of this option or we would probably be giving weekly shots by this time.  So, I want to pass this option on to you in case you check it out and find it may be an alternative for you:)  It is called AAT - Advanced Allergy Therapeutics.  You will find articles that say it doesn't work.  You will find testimonials that say it works great.  We are tentatively watching and waiting to see if the improvements "hold."  But for now, we are so thankful the we tried!

With this said, we also tried this "treatment" for some non allergy related things that she said it could help.  We have not seen any improvement with those things.  But...that is for another post:)

Today's Funnies

Happened to actually remember some funny kid comments today:)

I walked outside to check on the kids unseen and heard:
Faith in a singsong voice: "I'm going to Africa and it's a bad place."
Superman: "Wait, you ARE from Africa!"
Faith: "No! I'm Chinese!"
Me: Wha???? I guess I need to work on ethnicity and their beliefs about Africa since we focus mostly on how their parents were refugees and had to leave due to war!

Me: Here are some carrots with your lunch.
Superman: why do we have to eat carrots?
Me: Carrots are good for your eyes so you can see and don't need glasses.
Faith, taking a bite: I can see! I'm not blind anymore!!

Faith: "Superman, remember when Beautiful painted your toenails?"
Superman: "yeah, that was like 12 years ago!"
Grace: "huh? wait, I thought you were..."
Faith: "You were only 3."
Superman: "I was 4."
Faith (in an exasperated voice): "boys."

Grace (sound out a word list to me): "D A D. Dad? Hey, that's how you spell OUR Dad!"