Apraxia Session 10...and some fun stories:)

Session 10 was a bit crazy...I wasn't there!  The SPL had to move the appointment up an hour at the last minute and I had to meet with a supervisee...so Beautiful had to stop in.  Apparently he was not as cooperative as usual (not like he is ever really cooperative there, but the SPL manages him well) and Beautiful ended up bribing him with a box of wheat thin;)  So...nothing really to report lol!

I said I wouldn't post on every session, but perhaps I will continue to do so just to give a bit of a review of life of the week - hopefully more of the funnier side to life.

These past weeks have been insanely busy. My husband and I were gone all day Fri and Saturday again.  Sooooo thankful for the people who watched our kiddos!  The Friday conference was...difficult.  The Saturday one I spoke at on TBRI.  It think it went well.  I met some really amazing people and am so encouraged by the work they have put into have a strong support system of believers there to help with kids who come from foster care/hard places. Lots of love for adoption.  

We are making headway on the graduation plans, which is next Saturday.  I think we have it pulled together but my husband keeps reminding me that I do not have a diploma made for her yet!  Ugg!

Also in the craziness of life I was informed that I was dropped by a major insurance company as I didn't get some kind of paperwork in.  That really frustrates me as I thought I had it done correctly, but they make me do all of it online and we all know how good I am with that...

So, fun stuff...

Last night I had to go to the next town for work for only 1 hour so JJ and my husband came with me to run some errands.  Afterwards we went to a Mexican restaurant for supper.  JJ LOVED the chicken (he is such a chicken nut), the free chips in large quantity, and the music!  Oh boy did he like the music.  He just can't stop himself when he hears a beat and was standing in the booth shaking his booty and had his arms going too.  He was fully enjoying his Mexican experience!

We also discovered that he is apparently bilingual...my husband quietly asked me where the banos were and immediately JJ grabbed himself, started hopping up and down, and said loudly, "I have to go pee!!"  Fun times;)

It has been such a delight to hear him verbalize more and learn what is in his head.  He was in the fridge looking at food containers.  He kept asking me what things were and what they were for.  He grabbed the lemon juice and asked if he could try some.  I strongly suggested that he not so he asked me why we even have it in the fridge then lol!

Today I was at the computer and he was sitting next to me with his Kindle.  I got up to go to another room and he didn't see me leave.  He started yelling for me and came running and said, "Oh!  There you are!  I was scared!  I thought you left me.  I thought you went to work and left me.  I was scared!"  It was so incredibly precious to hear him say those words!  To have words of emotion!  We all know his intense fear of being without us.  Even at 4 1/2 he rarely will leave our side (although he is getting braver to go outside by himself much to our frustration...)  We know he has the fear but all he will do is cling to us and get dysregulated.  For him to actually put words on the fear was soooo encouraging!

Last "funny."  Today was Hair Day.  It took less than than usual due to her hair now being shorter, but it was still 7 hours straight of...hair.  When we got done we went for a walk - myself and the 4 youngest.   Superman picked up some garbage on the neighbor's lawn and Faith said, "I want to litter too!"  I tried to help her understand littering was actually putting the garbage there, not picking it up.  So she went from a different angle and said, "I want to do conversation!  How can I do conversation?"  I had to laugh out loud then and we practiced "conservation" versus "conversation."  It was funny...but I was so happy that she is clearly learning from her schoolwork and our dicussions on being a good steward, and she is caring about litter and "conversation"  ;)  

Apraxia Therapy: Session 9 Prognosis

Today we had session 9 of JJ's therapy to treat his Apraxia.  The SLP has been encouraged and encouraging.  JJ has been coming out of his shell more with her and more comfortable, which means he is actually talking with her (those of you who know JJ personally knows that he does NOT talk to strangers...or people he has known a long time even).

We had a crazy busy day.  My husband took 3 kids to the dentist - 2 Middles need fillings:(  I guess I will be back to brushing their teeth for them...

I took Beautiful and JJ to the chiropractor.  I have had a headache for 10 days and it is better now:)  My neck was in terrible shape as was my lower back.  I had traction (I still do it every several months just for maintenance for my herniated disk) and I am feeling much more myself today.  My thinking isn't as clouded either.  I am so thankful for our chiropractor:)  While Beautiful was on the roller table and I was on the traction table being stretched JJ actually went BY HIMSELF with the chiropractor (who has been adjusting JJ since he was 4 weeks old) and got his adjustment!  Willingly!  Happily!  With no fussing or problems!  The chiropractor was shocked to say the least knowing the problems we usually have getting JJ to let the man adjust him (last time was especially bad).  JJ even was eating before noon (another major shift for him) and did not get car sick!!  Yay!!!!!.

Then he and I dropped Beautiful off in a town 1 hour away to get her nails done and we went to Menards.  I bought white Christmas lights (for the wedding) and JJ rode in the "car" in front of the cart.  He asked for some cheetoes and I let him grab a bag while he was in the car which he kept sitting next to him.  When I checked out I didn't remember them and they are still in the car in Menards:(  When we got home he was telling his Daddy about his day and kept saying that we bought food at Menards.  It took me 15 minutes of him talking about it (of course all he can say is "sood" which I knew was "food" but had no words to tell me "cheetoes" or "bag of food" or anything at all that would describe what he was talking about and my memory is...not reliable of all the details of life anymore...) to remember the cheetoes.  He went on...and on...and on about it insisting that we go back and buy the cheetoes.  We had Awana Awards last night and he was so overstimulated before we left that I should not have even tried to take him, but wanted to be there for the Middles.  I ended up having to take him home (where he happily agreed to eat 3 hard boiled eggs) and he finally quit demanding the cheetoes so we could go back and enjoy the rest of the awards.  When he is hungry he is kind of like a pregnant woman with cravings...only that specific food that he craves is acceptable or he feels sick (I remember that when pregnant with Buddy).  How unpleasant!!!

Totally off topic there...

Then we went to speech therapy.  He continues to make gains and I finally asked the question that I have been wondering...after having worked with him for almost 3 months, what is the prognosis for JJ.  Will he get to "normal development?"  His SPL believes that he will.  His executive functioning, decision making skills, logic processes, cause and effect thinking, and other higher order executive skills appear to be very developmentally on target - even advanced.  Thus language ability kinds of things do not appear impaired.  So, we are really looking at the motor issues of speech, retrieval of language/words, initiation of motor skill (like a person with Parkinson's Disease, they "tell" their muscles to move but the muscles don't always cooperate).  She believes that 3 years of weekly therapy will get him on track developmentally.

Three years.  I am trying to focus on that being a very positive outcome.  "normal developmental."  Regardless of the time, "normal development" is the prognosis.  It is a good prognosis.  I am trying to focus on the fact that she is giving us an incredible discount since we are self-pay and not focus on what 3 years of speech therapy will cost.  I am trying to focus on the fact that 3 years isn't really that long in his life and not that we will have another kid graduated and the Middles will all be teenagers before he is done.  I am trying to remain upbeat, positive, encouraged, and pleased with this news.  It could be so much more daunting.

In only 8 sessions he is already eating better, walking more, happier, talking clearer (understood better by those of us who know him), less agitated, has fewer sensory dyregulation moments (although they are still daily), eating more types of foods (I don't think he could swallow them easily before nor could the textures be tolerated - he is now able to eat a sandwich!  With all of those food textures in it!  And eat more than 3 bites of food at a time!), initiating various developmentally appropriate activities such as dressing himself, trying to use a scissors, taking himself to the bathroom, putting on his own shoes, unbuckling his own seat belt, etc.  If after 8 sessions we are already seeing these kinds of gains we are very optimistic about what 3 years will bring:)  This summer he will do the music therapy (it is not "true" music therapy but I think it will be very beneficial anyway and will teach him intentional, initiated movement).  He LOVES music and "dancing" so I am hoping he will find it fun...and maybe possibly hopefully he will even learn to interact with strangers a little bit easier:)

So, in light of us doing this for the next 3 years, I will not post of his weekly sessions.  I will post monthly just to keep a journal for myself of his improvement and let those of you who want to follow his progress know how he is doing:)

Empowered to Connect Conference

This weekend my husband and I attended the Empowered to Connect conference.  It was powerful and wonderful.  It was emotional!  It took military strategic planning to orchestrate getting all of the kids situated with a total of 6 different families taking various duties of the kids plus our teenagers taking on a huge role to allow us to be gone from 7 a.m. Friday to 7 p.m. Saturday.  But it all went off just fine:)  Soooo thankful for the families who helped us out!!!  So thankful for our responsible teenagers who did a wonderful job watching younger siblings.  My husband and I got to stay away from home sans children for the 5th time in 18 years, 3rd time since we have been a family of more than 4.  It was a delight.  We went out for lunch the first day at Famous Dave's and my husband got to eat the All You Can Eat Ribs special without having the distraction of children lol!  Then we went to the Cheesecake Factory for supper.  That is a special place for us.  Our first time there was in Utah when we met up with the social workers and JJ's Tummy Mommy for the first time.  It was there that she confirmed she wanted us to adopt JJ, she asked me to be there when JJ was born, and she cried when she found out that JJ would be adopted into a family where the daddy cared enough to come up with a name for his son that was not his own...

We were SOOOO looking forward to totally uninterrupted sleep!  However, at 3:30 a.m. a group of apparently drunk people returned to their room just above us and kept us awake for an hour.  Then they got up at 6:30 and made a bunch of racket again.  We mentioned it when we checked out and the staff had already heard plenty about them...  I was so upset that I had forgotten our sound machine at home - I know I would have gotten that always elusive uninterrupted sleep had I just remembered the machine.  But...can't get getting used to such luxuries can I lol!

Most of Saturday Buddy was responsible for JJ.  The two of them have such a special connection.  It brings me much joy to watch them together.  Buddy has his own special nicknames for JJ, "Munchkin," or most frequently, "Munchie."  Buddy smiles and lights up in a special way for JJ that is so precious.  Buddy had a hard time for a few years after we brought the Middles home.  We all had a hard time for years after we brought the Middles home.  I am so glad for the laughter that JJ has brought back to our family.  He is a gift.

Even today when he was quite a bit more ramped up during church than usual and threw a rubber spider (that he was putting on his head) over his head making it land on the floor of the pew in front of us.  I am not sure that those people will ever sit in close proximity to us in church again.  I laughed so hard that I was crying but managed to not make a sound.  Then Buddy started to "steal" the rubber bugs from JJ and that got him being even... sillier.  Yes, it was definitely more of a distracting (and noisy) church service than usual.

Raising kids from hard places is not like raising kids who enjoy "optimal development."  Everything is harder.  Everything is more complicated.  Everything that one thinks they know about parenting must be re-examined, and everything about discipline must be re-examined.

The Empowered to Connect conference taught TBRI, Trust Based Relational Intervention.  TBRI is a way of working with kids who come from hard places that recognizes the implications of what those "hard places" have done to the child neurologically, emotionally, physically, cognitively, etc.  It looks at the child as one who is seeking to "survive" their situation and is, even though they may be safe now, not feeling safe.  Thus, they continue in their old patterns of "survival" that look, to the bewildered and shocked adoptive/foster parents and other caregivers, like willful defiant behavior.  Once the caregiver begins to see the child from a "survival" perspective they can then intervene in ways that make the child feel safe and encourages them to have a "voice" and be "heard" (becoming the coach/mentor and not a warden).  This disarms the child's fear response that makes the child respond in ways that look defiant and willful and helps them come to a place relationally that they use their words appropriately to get their needs met rather than through behaviors that end up making everyone feel like they are living in a prison.

Add on top of that kids who biologically have sensory issues that get way too overstimulated seemingly way too easily.  Then that over stimulation makes it so they aren't able to process or make decisions in logical and rational ways.

On top of that, these kiddos have learned from an early, early age that caregivers are NOT to be trusted.  So if you try to intervene and be helpful they do not process it in a way that "optimally developed" biological children do where the child thinks, "this person loves me and I can trust them so I will calm down and feel safe and move forward with healthy behaviors and choices."  Telling them that they are safe and loved is not sufficient.  They need to feel safe...feel/know/own their preciousness.

That isn't any different from being a child of God, right?  It is one thing to be told that He loves us, died for us, and we can trust Him.  It is entirely a different thing to know in your heart, in your very marrow that He created, died for, and intimately knows and cares for us...to the level that we can completely and totally trust Him for ALL things and stop trying to wrestle control from Him.

Anyway, having kids who have these difficulties makes for parenting that feels like playing the Wipe Out course.  And for the child it is exponentially worse.  And if there is more than one child in the home...

**********

And this brings me to the vulnerable part of my post.  I attended the TBRI training for masters and doctorate level providers back in 2011.  It was a 10 week pre-course of 5 modules of lectures, research articles, and books followed by tests.  Then  we went to TCU and I sat for 40 hours that week with 80 other professionals and learned about how to implement TBRI.  It was like drinking from a fire hose.  The perspective was unlike that which I had been taught before but having had our 1st kiddos home for almost 5 years at that point I knew that it was what we needed to know.  I had to wrap my mind around how it was different philosophically.  We implemented many of the changes with JJ right away.  It was admittedly harder with the other kids as we had already developed patterns of responding with them, many of which were not consistent with TBRI.

I have been continuing to use TBRI at home and use it in counseling often.  However, my husband only knew what I had been telling him so we thought it would be helpful to go again to the parents version.  Much of it was similar but much of it struck me differently this time.  Probably because we are in such a very, very hard place in parenting some of the kiddos right now and part of it because I already had enough understanding of TBRI from a "nuts and bolts" perspective that I was able to process it more emotionally this time.  Much more emotionally.

I found myself filtering the conference from several different perspectives and it made my head swim to do so.  I am posting this in part to try to keep that all straight.

First, I thought of it from a professional perspective.  There is new research and new information out since 2011 and it was great to hear the information.  Also, because it wasn't so "new" to me, I was able to fill in blanks in a way that answered many of the questions that I have had regarding the "hows" of implementation.

Second, I thought of it from the perspective of someone who is going to present it in less than 1 week.  I already had the presentation done, but I realized that I wrote it all from a perspective of "how" rather than addressing the "why."  It is a very different way of conceptualizing our kids than traditional parenting, psychology, or even the church would advise.  Therefore, I devoted a separate section in my notes just for what I have to change in my presentation to help the attendees understand why they need to use TBRI.  I have to laugh, my husband is not one for sitting still and listening to anything without falling asleep.  He had to alternate between sitting and standing just to stay awake while I was so busy feverishly writing all kinds of notes that I wished I could just tape it all.

Thankfully, at the end they said that we could buy an audiotape of the conference.  I will be doing that.  I am hoping that it will be a good refresher for my husband and I to listen to again and that the teenagers can also listen to parts of it and better understand.  Living in this house is traumatic for them too.  But, I am also hoping that our friends, and hopefully our family, will be interested in listening to it if they want to better understand us - or other families who are have "kids from hard places."  There is another conference in September in Eden Prairie, MN and I cannot more highly recommend going.  I am happy to loan out my audio of the conference though if anyone at all wants to hear it if you want to better understand (but it is not the same as seeing it;)

Third, I processed it from the perspective of a parent.  I had a hard time not crying when I was confronted with the many mistakes that I make.  Parenting these kiddos is so utterly exhausting.  I don't have much in me at the end of the day but to just get the "needs" done.  I have known for a long time that I don't have much joy anymore.  Everything seems to be "how long can we survive until the next blow up?"  Those happen multiple times a day.  I began to see the message behind the blow ups differently and began to have hope that this ship really can be turned around.  Being there with my husband and having him hear and understand was necessary for me to know that I am not trying to do this myself.

They spent quite a bit of time talking about attachment.  I have learned tons about attachment in the past but there was a slight shift in the way that they talked about it this time that really, profoundly clicked for me.  It wasn't as a professional looking at it from the outside, but as a parent who yearns to be attached to my children.  It may be the biggest shift yet in my parenting and was very emotional for me.

Fourth, #3 led to me processing it from a perspective how I was parented.  Pealing back the layers of how I parent, and why I parent the way that I do brought me deep levels of regret and vulnerability.  I will attempt to say this in a way that is as honoring to my parents as I can be, but I began to look at the patterns how I was parented and although I have long realized "why" things were done the way they were and have "dealt"with it, I never wanted to parent that way.  Yet, I realized that in the chaos of parenting 3 toddlers who had come from hard places, I went right back to that pattern.  And, even worse, I have realized that since the loss of Superman and Faith's little sister, I retreated even further into that pattern.  If I am completely honest, I do not think that I used that pattern at all with our 2 bio kids prior to the Time of the Toddlers.  My husband doesn't think so either.  I also don't think that I have used that pattern with JJ.

It essentially comes down to this: do my children experience me as being emotionally present and attentive to them?  I am not talking about just being physically in their lives (my husband or I are with the kids 95% of the time...or more).  I am not also not talking about just meeting their physical needs.  But emotionally do they feel like our hearts are connected?  Or... do I close myself off?  I think that the reason we had so many issues with the now teenagers after the Middles came was that they had me before... and I retreated.  Keeping oneself emotionally present for the constant emotionally needs of the kiddos was like having 1000 vacuums simultaneously sucking at my soul.  We "got 'er done" in the physical, but not emotionally.

I have to laugh at our kid's responses to me today.  All the way home my husband and I talked about the practical things we need to do differently.  The vast majority of them have to do with how we handle JJ and Grace's "emotional dysregulation" moments (or...longer than moments).  Dysregulation happens constantly in this house and it feels like we walk a minefield.  There were good suggestions on how and when to intervene.  So, I implemented some of the tools that I wasn't using before.  Beautiful said to me many times last night, "Mom!  What is wrong with you?!?!"  She said it again this  afternoon, "Mom!  You don't have to use that fake happy voice!"  However, Grace then jumped in with, "Yes she does!  She hasn't yelled at all today!"  Sigh...The teens know it is not authentic (yet...I WILL get there!!!  I WILL find the joy in this!!!) but the constantly dysregulated children are responding as they should...No level 4 behaviors yet today, only 1 level 3 behavior, quite a few level 2 behaviors, and a mostly we have stayed at level 1 behaviors.  That, in this house, is major, major improvement.

I expect that I will remain exhausted, but I am hoping that this shift will calm things overall...over time.  They say it will take 1 month of consistent intervention per 1 year of the child to overcome this...we've got time;)

Gotta go...a child is quickly disregulating and I must go intervene!

*****
Well that went to a level 4, but we got back on track:)
Then another child went to a level 3 for too long but we got that back too.

Always an adventure:)  Off to rock and snuggle 4 kids while watching Andy Griffith!!

Apraxia: Session 8

I have decided that even though I just posted I had best post after each session or I will forget details that I want to remember!

Today Ms. Erin was again impressed with JJ's improvement with the /f/ and /v/ sounds.  He is making them more consistently and it is increasing his ability to be understood.

Ms. Erin says that JJ is a very visual learner and doesn't forget things visually.  However, he is having a very, very hard time with word retrieval.  Think of it like talking with a person with Alzheimer's (or me most days).  They know the word that they want to say but they can't get it "retrieved."  So, they name some attributes...or give up frustrated.  She suggested that in order to get JJ's brain to start making more neural connections for speech we are

1) to talk about the attributes of things that he cannot retrieve.  For example, he can never remember the word "chex" even though he prefers that cereal.  So we are to talk with him about attributes when he is thinking of it...square, crunchy, cereal, etc

2) going to try using an itouch to take pictures of frequently requested words that he has trouble retrieving.  Then he can scroll through the pictures and point to what he wants.  He is NOT having trouble chaining words together like most kids with Apraxia.  His speech is coming along pretty well.  But now that we can understand more of what he is saying, we are recognizing that he can't "find" the words, so the pictures will hopefully help.  He is unable to retrieve colors, numbers, letters, etc.  I know the next hurdle will be learning to read.  He is NO WHERE near ready to start that.  But, the visual reminders will hopefully be helpful for verbal communication.  He clearly has the "picture" in his head when he trying to tell us something, but just can't get the right words out.


Beautiful's fiance is on break from college and came with us today.  He sat in the back of the car with JJ and I was able to just listen to their conversation for 30 minutes.  I learned a couple of things.

1) Beautiful's fiance had never ever been around little kids prior to joining our family (lol! - he was sure in for trial by immersion lol!)  He is absolutely fabulous with the kids and they adore him:)  He will be a great "big brother" to them:)

2) JJ is always a clown.  He is forever making people laugh and doing lots of antics.  But today when I was listening to Beautiful's fiance talk with him in a way that was more direct than the rest of us do (we don't ask JJ to name things, etc and have learned to anticipate his words so he doesn't have much pressure in that area), and realized that JJ will use humor and joking when he is unable to retrieve the right word - so he will just say some off the wall crazy thing with the intention of making us all laugh...and thus get off task of what we were originally asking.  It was very deliberate and intentional, and I realize now just how frequently he does this.

However, when he is with strangers is unable to anticipate what will make them laugh or what words they will understand.  He is too anxious about their presence and their expectations, not to mention being in an environment that is way too overwhelming sensory wise.  So, he just clams up and is quiet.  He needs us near to "interpret" and buffer people.  It is all fine, I am just starting to understand it more:)

The SLP suggested that JJ enroll in some classes that their music therapist will be doing in June/July.  It will totally mess up my work schedule and require me to drive 45 miles one direction for therapy in the morning just to come home and drive 25 miles the other direction to work in the other direction...then obviously have to move that morning clinic to another day:(  But... JJ LOVES LOVES LOVES music and whenever any is on he is moving and dancing to it.  The SLP says that kids with Apraxia can gain huge benefit from it.  So...I think we are going to try to make it work...adding one more thing during baseball and wedding planning season;)  At this point I can't figure out if I should put him in the 2.5 - 4 year old or 4 - 7 year old class.  I will probably have the SLP tell me which of the classes would be most beneficial.


As an aside, it was so much fun to have Beautiful's fiance with us today.  He is a joy to know.  We had dropped Beautiful off to take a test, then he, JJ, and I went to Hobby Lobby to get some items for the wedding.  We then went to JJ's therapy while Beautiful's fiance drove my car to go back to get Beautiful.  His knees were up pretty high when he tried to get behind the wheel, and he said that he had never been so low to the ground while driving before (he drives a truck...and is 6'5").  It was pretty funny to see him try to drive my Toyota Corolla lol!

Another success though was the JJ WALKED the whole time that we were shopping!  He didn't ask me even one time today to carry him!  He seems to finally be gaining some momentum.  He is eating a ton, growing, happier, and seems to have more physical stamina than he had before.  He is also saying "please, thank you, you're welcome, and excuse me" appropriately and most of the time...spontaneously!  I don't know how all of those things are related but it is very encouraging to see:)

Apraxia sessions 5, 6, 7: so many successes!

Saturday April 4, 2015

Tonight, for the FIRST TIME EVER we were able to cut JJ's hair WITHOUT HIM SCREAMING!  No one had to hold him down.  It was a success!  It was AWESOME!  We implemented several of the things that we are learning about his sensory issues, he was able to use his words to tell us what the problems were so we could correct it, and it worked!  Yay!

I don't remember too many specifics from the past 3 sessions.  It seems that once we got through the first 4 sessions of diagnostics and information download, now we are into application.  She initially worked with him during sessions to chain words together.  However, after she realized that he talks constantly at home, not having a problem with chaining words together at all like many kids with Apraxia, she changed the focus.  He still won't talk in public, but he is capable of speaking looooong sentences,paragraphs...monologues.  In fact, it is usually pretty hard to get him to be quiet lol!  That is a very positive indication of his prognosis.

She has been working with him to be able to "bite" or tuck his lower lip so he can make the "f" and "v" sounds.  He was unable to in session 5, but by session 7 he was able to do it!  Even in session 6 he was able to do it a little (getting the idea down), and would spontaneously practice it at home.  He now does it when reminded, but not on his own for words.  This is a good example of the difference between an articulation error and Apraxia.  When you think of a person who walks "wrong" by walking stooped over, leaning to one side, etc that is like an articulation error.  The person is capable of walking, but they need to practice strengthening the muscles so that they walk properly.  However, the apraxia analogy would be if someone has had a head injury their brain is incapable of sending the signals properly so the person can move the muscles properly to even walk.

Articulation errors are like the first one - the person is capable of making the sounds but needs to practice doing it right.  Thus, there is a lot of repetition and practicing.

With Apraxia the brain isn't sending the right signals to the mouth to move correctly.  Therapy is spent trying to get the brain to process and "wire" the right signals.

The therapist worked with JJ by giving him visual cues (modeling with her mouth how he should move his mouth) and by using a straw or a sucker to help him tuck his lower lip so he was getting the muscular/sensory feedback how to "bite/tuck" it for those "f" and "v" sounds.  She was THRILLED that he was able to do it!  Giddy.  It was fun to watch:)  A lot of kids with Apraxia are unable to see another's mouth moving and then send the signal to their own brain to mirror it.  Another sign that JJ's prognosis is positive:)

Buddy came with for the last session.  He is growing so fast that he was out of jeans that fit him so had to endure the social experience so we could then go get him some jeans.  I think that Miss Erin (she is married with kids - not a "real" Miss) was utterly shocked to see the animation in JJ when he is with people he knows.  With me he hides under my legs, sits on my lap, and sometimes is adventurous enough to walk around, but cautiously.  With Buddy there he was what we see at home.  They were throwing a ball back and forth...aggressively.  JJ was flitting from object to object to check it out.  He was trying to wrestle Buddy to the floor.  He was loud, talking a lot, and his "normal" self.  She had quite a time getting him focused to do what she had for him.  She used Buddy as the guinea pig doing a lot of "Buddy is going to say F Fun.  Now you say it."  It was good for her to see that side of him and know what he talks/acts like when not with strangers.

Miss Erin is teaching me a lot about how to interact with JJ.  First off, she models for me how to over articulate everything and look him in the eye so that JJ can hear and see, and try to model correct sounds.  Second, she always maintains the upper hand by "prescribing" his behavior even when it is not what she said to do.  For example, if she tells him to put the toy in the box on the west wall and he puts it on the east wall (clearly in an attempt to be in control) she will, as she sees him head to the east well, say "Oh, you want to put it in that bucket?  That is ok."  She follows him around on her knees trying to tuck his lip or watch his mouth placements as he is moving all over the room and the waiting room.  She avoids all power struggles with him.  I have watched and modeled that and we are having far, far fewer power struggles with him at home.  His temper tantrums are less frequent.  I spend a lot of time studying his behavior and trying to understand what is behind it so that I can intervene appropriately.  In return we are seeing huge improvements in his temper and oppositional behavior at home.

Some things we are seeing:
The hair cut as mentioned above.  Absolutely HUGE!  For 4 1/2 years we have had to hold down a screaming, hysterical, very angry child to cut his hair.  This time he used words to tell me what was overstimulating, stopped to actually listen to me tell him what needed to be done rather than just fight me, and "helped" by having his hands on the clippers and counting with me the number of "swipes" I still had left.

He is changing his own clothes!  Every day!  He is makes a big production out of trying to match his clothes - it is cute:)  Unfortunately he has decided in the past week that going "commando" is preferred...sigh...  but hey, he is taking initiative to change his own clothes!  Apparently his underwear are uncomfortable for him (sensory issues) so we are going to find him some boxer briefs and I hope that helps:)

He is taking initiative to do so many more things than he used to.  He feeds himself more.  He walks himself more.  He uses his words to tell us he is hungry instead of us guessing when he is grumpy.  He is learning to run the TV remotes to change the channel himself rather than yelling at us to do it.

He uses attribute naming to get us to understand things rather than getting upset when we don't understand the words.

He is actually asking for what a word is rather than getting frustrated that he doesn't know.

He is eating A LOT more.  He has some goofy food preferences.  He doesn't like chocolate or cheese.  He loved eating my spinach salad with hard boiled eggs in it, but wanted me to pick out all of the cheese.  He loves eggs, but no yolk (he has called it cheese so I think he thinks it is cheese).  He loves pepperoni pizza (and will eat the cheese on that - go figure) but wants the pepperoni picked off VERY carefully so that it does not disturb the cheese at all.  If you just give him a piece of cheese pizza...he will let you know that is not acceptable.  He still loves shrimp and will eat any meat if you can get away with calling it chicken.  He used to only eat the meat off of a subway sandwich, but Thursday he ate 1/2 of Beautiful's 6 inch sub!  He is gaining weight and getting taller, and is now his size 4 pants are too short!

Miss Erin told us that by working on speech issues it would help feeding/swallowing issues, but working on feeding/swallowing issues will not fix speech issues.  We are absolutely seeing that.  Eating must not be as uncomfortable for him as it was before because once his motor cortex "wakes up" (he still cannot/will not eat prior to noon or 2 p.m.) because he eats all evening long - at least 3 times as much food a day as he used to!!!!!

It is kind of like he is progressing to a two year old stage.  That developmentally he is moving out of "helpless" infant stage and moving into that stage of independence.  He has wanted to be independent before, but was unable to use enough words to do that well or have the fine motor skills to do it.  It is VERY exciting to see him move forward this way and again it is a very positive sign of his apraxia prognosis.  It also helps him feel more independent so his temper tantrums are decreasing:)

Some problems we still have:
He continues to be very afraid of strangers and still wants to be carried or held whenever we are around strangers.  We went to the zoo several weeks ago and he was afraid of the crowds.  We bought a new wagon for him to ride in but he didn't like it as it made him too far away from us with strangers around (unless one of us walked next to the wagon and held his hand).  At least we had a way to carry the cooler/water/jackets around lol!

He still doesn't go to sleep until after 11 p.m.

He still gets car sick from the sensory overload too early in the morning before his motor cortex "wakes up."  When we went to the zoo we left at 9 a.m. and he vomited 5 times by the time we got there:(  Without having eaten anything:(  Lots of sensory issues remain, but we are learning to work with them!

But, overall he is making huge progress and we are excited about his prognosis!!

It is hard...

I wrote a long blog post about the realities of the dark black yuck we are dealing with right now.  But it is not acceptable to post.  I process verbally so typing this out helps me to clarify issues and keep the main thing the main thing.  With that said, this will be a hard post but I have toned it down...a lot.  Things are hard right now.  It feels violating to live in a house with people that you can't trust.  Your own kids.  The ones that you have taught right and wrong to but they make choices that are...wrong.

There are so many good moments.  Moments when "the stars align" just right (just kidding) and things are smooth.  Grace is better when it is just her alone or her with 1 other child... and supervision is constant... and structure is maintained... and her sensory needs are being taken care of...when it is the middle of the day and her meds are in full effect...or when you stick an ipad in her hands for hours....etc.  The mornings and evenings are indescribably difficult, ugly, painful, exasperating, frustrating, and make me think that bloodying my head against a wall would be a better alternative.

But then there are the moments that she is so sweet.  She loves to be helpful (during that "sweet" time in the day).  She wants to be kind.  She is capable of being gentle.  She loves to make gifts and color pictures for people.  She loves to snuggle and give/receive love via physical touch.  She tells us constantly that she loves us  She can be so precious that I forget what she will be like when the meds wear off.  Starting and ending the day the way we do is EXHAUSTING.  When the meds wear off she is physically aggressive, she is so verbally caustic that it just poisons the relationships she has with people around her.  She.argues.CONSTANTLY.  She.opposes.CONSTANTLY.  There is no way to describe how difficult the mornings and evenings are.  Beautiful just showed me a video she took on her itouch a while back when Grace did not know she was being recorded.  She.is.a.terror.  She has also threatened to lie to others and accuse us of things that did not happen.  Talk about living in fear of a tyrant!  She is capable of not being nasty when she is with non-family members (she is still impulsive and annoying as she tries to take charge but won't "hear" the word "no," but not mean) after her meds wear off.  It is frustrating that she won't do that for us...

She is so precious during that "sweet" time in the day.  I just read yesterday about genomic testing.  Apparently they can test a person's genetic markers for ADHD against certain ADHD meds to see which med would work the best.  I am not sure how to go about the testing but I am considering looking into it.  The downside of ADHD meds is that they take time to take effect in the morning and they wear off.  There is no way to have them work 24/7.  Ugg.  To be completely and totally honest, right now I could care less if the medications help her to focus and learn anything academic.  I just want her to be not oppositional and to not feel that I am living with 30 hormonal teenage girls from a prison camp all trying to be the Warden!

Issues with another child that has been flying just above radar for years is now coming to a head as well.  Stealing (candy/etc) in our home and lying.  It is so cliche that an adopted child has food issues...but the reality is that many adopted children have food issues!  My father taught me that whenever the words "I promise" are said, heaven and earth had better be moved to make sure that the promise is carried through.  So when a child looks at me in the face and says, "I didn't!  I promise!" and that is not the truth...I cannot describe how much it frustrates me.  So, essentially we have two children in this house who have to be treated like 1 year olds that cannot be unsupervised for even 1 minute and we have to assume that anything they say or do is suspect.  I keep looking ahead to teen life in utter fear and dread.  The other 4 children are so constantly negatively affected by these issues.  We don't get to do the "fun" things that families love to do very often because it all has to be gauged around when the meds will be working, how much supervision is required, if a child is having a "good" or "bad" day, or the level of grounding/loss of privileges a child has.  I feel like a recluse but it is about the only we way we can survive.  Forget all of the separation anxiety/food issues/over stimulation/Apraxia issues that we have to deal with with JJ!

This month we have someone watching a couple of kids overnight.  I know she will do well and she will stay on top of things.  I am most afraid that I will get so much relief from it that I will ask for her to do it all of the time lol!  Just kidding:)  I think...;)  I am so thankful...so SO thankful to this woman for being willing to love on our kids right where they are:)

So, without airing specific dirty laundry of ours, please know that we are in a tough loooong season right now and covet your prayers, and coming alongside of us if you feel led.  I was thinking yesterday that it was Good Friday, and we are living in a "season" of Good Fridays so to speak, waiting for the freedom from sin promised on Resurrection Sunday... but still stuck in the reality of Friday.  Jesus' followers were shocked and horrified and paralyzed with the events of the day when it seemed that darkness would reign.  They did not know what was coming next.  They did not know how much worse it would get before it got better...or that it would get better.  That is where we live right now.

I wish we had family that was close.  I wish we could get a break with grandparents or aunts and uncles taking them for breaks, overnights...heck, lets dream a little...weeks at a time.  But, that is not our reality.  Because of my fear of people rejecting us or judging us (or our kids) I have not talked as openly about our realities.  Fear of people not liking our kids after all of the rejection they already have to overcome in life.  Fear of people seeing our kids as their problems instead of as the precious lives that they are.  I fear people making comments like they have before that it is our own fault for adopting so many children.  I have to ask...which one(s) shouldn't we have adopted?  I cannot imagine our family without these 6 kids.  I know that I know that I know that God specifically put these children in our home.  I wish many issues were easier...but these are our children.  They belong here as much as my arm belongs on my body.  I know the situations they came out of...which ones should we have left there or left to sit in a non-forever home?  I recently found out about the situations of 2 of our birth moms.  It makes me nauseated to think of if our kids were still living in that...it makes me even more horrified to think of my kids' siblings who are still living in it...  If us having to live with the difficulties we deal with is the alternative to them living in that...then I would say yes a thousand times again to keep them from that.  I am crying just thinking about the little that I know that their siblings are enduring...

But the reality remains, we are exhausted and afraid, and it is humbling that we can't do this alone.  It is time to be real.  It is uncomfortably vulnerable for me, but it is time.

Looking forward to the promises of Resurrection Sunday...while striving to persevere through Good Fridays...