A Father / Son chest thump ...

I think I just had a moment. Not a moment like my oldest just lost his first tooth. Or that our newest now wears glasses. Not a moment like the personal satisfaction of completing a marathon.  Not the same as those, but a moment no doubt.

Yesterday E1 broke through the uncertainty, doubt, and fear and became a bicycling road warrior!  

I feel like pulling a Tim Allen and doing a caveman grunt and chest thump.  And you know what. I think E1 felt like doing one also.

Atta boy!!!!

Neuro Reorg Week 3

I have to say one of the most gratifying comments we have recieved in the past few weeks was from our amazing Early Childhood Teacher who I gave a copy of our first NR post to.  She simply said, "we always suspected K operated in fight or flight mood most of the time".  When T&I started the NR road, we were convinced in our own minds this path was really what K needed.  To hear from our Early Childhood Teacher that feedback from our NR practicioner fell directly in line with their assessment felt really really good.  I ask myself about 1000 times a day if we are doing what is right for K, and not being in the mental health profession, it is hard deciphering between all the therapies that are out there.  To get a confirmation from someone that knows our daughter and has worked with her daily over the past school year, that we are on the right path really put my mind at peace.  It is a long and difficult path, however.  I was at a trauma mama meeting the other night and I mentioned that we are doing NR with K and the therapy is about 2 hours a day.  Another mama asked, with 4 kiddos, how we found 2 hours a day to do the therapy?  Without hesitation, I answered, "What other choice do we have, other than to find the time?  This will affect the rest of her life if we don't address the foundation issues she has in her brain, we have to make the time".  I just pray God will give us the strength and patience to get through it.  I had an opportunity to discuss this with our fantastic summer tutor A this week as well in addition to providing her with a little background on NR, because I havn't dumped enough info on her yet LOL!  (who knew our kids came with so many instructions!).  Thinking of having a little sign made up for our front door "Please excuse our mess.  Brain Rescrambling in Progress"

From the Land of the Weird

We are starting to notice a few strange things going on with K as we continue on our NR journey.  One of the weirder things is one of the exercises meant to help her two sides of the brain talk better.  As we pass through the midline, she starts blinking quickly or does strange movements with her mouth.  A few of the other families are having similar reactions, so it doesn't seem all that unusual, but it is definately weird to watch.  The professionals are saying that it is a sign that the two hemipheres of the brain are not fulling intigrated or connected when this is happening.  The creeping has been 25 min's a day of pure torture, she hates it and fights it every min.  When we read that some families have been doing creepings for 6 months it is pretty depressing and the constant battle of the wills over the creeping time is exhausting.  There are times when it appears to be getting better and more fluid, but then it goes right back to an uncoordinated mess.  Her moods also seem all over the place, like the filter has been removed and she is just exploding emotion she has little control over at everything.  Again, this seems to be pretty common with other families in that you take one step back before moving forward.  She was trying to hurt sister this weekend, so I was keeping her close and it just spiralled out of control ugly really fast as she tried to manipulate me into letting her go over by sis by telling me she was fine, but then would grab for sister the second I moved.  She went from cackling to crying to screaming to laughing, it was like emotion soup in her head.  I ended up taking her inside and she just sobbed and sobbed as i rocked her.  wow!  It was a lot to take in but I was able to employ the "C" for curiosity and the "E" for empathy at least.  For now, just hanging in there and trudging slowly ahead...we hope.... 

Weekend Came and Went

The first weekend with the new neuro reorg went well.  I think we got in the majority of the goals and actually did the poses twice yesterday (120 repetitions each for 3 positions), which was the first time since we started.  We are getting more efficient and K is starting to learn what she needs to do to get it done.  T noticed that she is blinking excessivly when she is doing them, so we arn't sure if it is dust or something (because we are on the floor), or if there is actually something triggering in her brain.  The creeping is still HARD.  We are finding less and less to motivate her enough to do the creeping and she doesn't seem to be getting any more efficient at it and until she does, the 25 min goal will remain.  She has a goal of 5 min's of crawling, but when you do let her crawl, its like you open the gate and then she won't creep anymore or cheats the creep as a crawl.  Her behavior in general is still off, from what it has been over the last few months and I'm not really sure why.  A lot of defiance and moaning about things that would seem pretty minor to the rest of us.  The big trigger this weekend was over chapstick.  N and I returned from the store and we didn't even get out of the garage before K was screaming at both of us for not getting her some chapstick too at the store.  I waited for her to calm down and asked her if she thought I would get N chapstick without getting her one? No, she replied, I asked her if she thought i might have one in my bag for her? Yes, she replied, I then asked her if she made a good choice by screaming at us like that?  No she said as her face sunk.  It took her the better part of a day, asking constantly about it, trying to manipulate, to earn it by making better choices.  In the end, I think it was one of the more effective logical consequences we have done.  She clearly understood that her approach to the situation had caused her not to get something she really really wanted and as hard as she tried, she couldn't blame me or her sister for it.   I could see the wheels spinning though... I had not forgotten about her..... I had not bought her sister something without getting something for her too, oh what to do!  She was perplexed, truely perplexed, it was interesting to observe how she tired to wrap her head around what happened then tried to repair what she had done.  Sunday Religous Education class brought another challenge, she had been doing well all year because the class is short and there are usually lots of fun crafty projects like she really enjoys, but last week she was sent out of class for putting her hands on the other kids during story time and not listening to the teacher, well, she got to sit out front with one on one attention which is great if you are trying to reward bad choices.  So we had a talk this week with the teacher, and even though it was the last week, we wanted to prevent any additional rewarding of bad choices.  We set up for them to come and get us if need be and explained the importance of ignoring behaviors so they arn't reinforced, but they were in big group with a lot of activities and it ended with no drama.  Big ENT appointment this week for K's surgery, so lots on the horizon!

Neuro Reorg Day 3

Oh man, exhausted doesn't describe it.  Our routines have been flipped on their head as we try and squeeze as much of our daily neuro reorg stuff into an already packed schedule.  Weekday morning are tough to incorporate anything into except a few mins of the 25 min goal of creeping each day.  I have forgot more things in the last three days than in the last month!  While we accounted for the fact that we had about 2 hours at night to do the exercises, what we didn't account for was the fact that K's endurance is terrible in everyday activities and trying to get her to do 25 min's of stomach crawling is really really exhausting for her, especially since her creep is a mess.  Surprising, as we have gone through the exercises, we were convinced, because the boys went through many of the milestones with us that they would rock the creeping work, or NOT!  We knew N didn't walk until she was almost 2, which made us feel that she might benefit from some of the exercises, or NOT!  Surprise again, she floated across the floor like she had wheels under her!  My jaw dropped and she was lightning fast, it was awesome to watch, her run is awkward to say the least, but it is good to know that she has a good foundation to work form.   Heading into the weekend will be interesting.  Friday is normally a sit back and relax night, but again, it was neuro reorg from dinner to bed.  We will see how proactive we will be this weekend at trying to stretch things out over the entire day and not wait until evening to get everything accomplished.  No rest for the weary! 

Neuro Reorganization Day 1

We had our much anticipated meeting for K's neuro reorg today.  The appointment was close to 3 hours long and I am kind of feeling like my brain is melting.  There is a lot to remember.  The long and short of it is that K's  lower brain is not functioning as it should, so like a building with a poor foundation, we can keep trying to build on it, but if we don't fix the foundation, everything will remain shaky.  Importantly, it came out that our NR will let us know when the appropriate time to start therapy with her will be.  Right now because of K's processing skills, there wouldn't be anything to gain from therapy.  We need to fix the foundation first.  One of the key things we learned is that K didn't have the foundations in utero or in her first months after birth that she should have.  This is reflected in birth reflexes that she is still retaining.  These should have been lost within a few months of birth, but she still shows at least 4 of these reflexes.   On the next level of her brain which is the PONS, 1-4 months old, is key to deep emotion, fight or flight, feeling safe and secure.  It is likely that she didn't develop the PONS level correctly, so to her, the world is not a safe place and she stays in that fight or flight mode constantly.  This reflects also in her eye contact, her horizontal and vertical eye tracking skips and she can not converge on an object, but instead diverges, this is part of her hypervigilance as she has issues paying attention because she is always distracted looking for potential threats.  Another major connection is her inability to sense pain, overreacting to some and underreacting to other, this pain center also ties to empathy, if she can't sense pain in herself, she can not feel empathy for others or make the emotional connections.  On of the other exercises shows she is hardwired to the flight or flight reaction when placed under any stress.  Her brain reverts to the PONS level and she shuts down.  Our NR also ID'ed quite a few midbrain issues as well.  For now, we are going to be working on the PONS level as that will likely cause some of the midbrain issues that she saw to fall into place.  Based on the evaluation, the issue we rated highest she is having, and the plan for rebulding the basics, she developed a series of daily activities we will be working with K on.  They are quite extensive and there is a learning curve involved, but so far, K was pretty cooperative.  Our follow up is in 3 months, so hopefully we will make some good progress over the summer with her home with us 4 day a week.  Time for some rest and tomorrow, trying to incorporate some NR into our morning routine

Injustice

I was distracted in church this Sunday, sitting in the pew, staring, yes, staring at this 4 month old baby two rows ahead of us.  She had on one of those little headbands with the giant flowers attached to it that are almost larger than the baby's head, you know the ones I am talking about, her cute little outfit, matching shoes and stripped tights, a bag of teething rings, fresh diapers, bottles, toys, changes of clothes, etc, etc, etc, you get the picture.  She was surrounded by grandma, grandpa, mom, sister, brother, all ooohing and ahhing and jumping at any little wimper that came out of her adorable little lips.  As I stood, sat, kneeled, with my eyes fixed on the spectacular show going on in front of me I felt myself becoming more and more furious.  Furious that my babies didn't have that when they were infants.  That they wern't oohed and ahhed over, that they didnt get picked up the second the let out a wimper, that they didn't have an extended family that played with them and made silly expressions while blowing raspberries on their tummies, that they sat in their waste for hours and hours crying for someone to change them, that they never knew what it was like to fall asleep in mama's arms listening to her heartbeat, that they came to believe the only one they can rely on in this world is themselves, that they had their little hearts broken over and over again and convinced themselves that the world isn't a safe place because there was no one there to keep them safe when they were so vulnerable.  The thought of my kids crying for help and no one coming is unbearable to me and so stiffling that it becomes difficult to breath, but I didn't have to live through it, they did.  That injustice remains with them and I can only do my best to help them heal. 

A Prayer for Today

I pray today for the intercession of St Gianna. Through your vocation as a mother and doctor, you honored every human person and saw value in every life, you looked beyond the label of "special needs" and saw every life as a gift from God that should be loved and cherished and given the opportunity to live life to its fullest.  Holy Sprit, Source of every perfection, I ask that you give the doctors on all four corners of the world the wisdom and knowledge to piece together this puzzle.  You know what is in our heart and our boundless love for this gift You have given us.  To You be the Glory forever and ever Amen. 

In the past 24 hours

I have not stopped but for sleep.  The world has been racing and I have felt desperate to cling on its coattails.  So much seems to be happening so fast I just want to take a step back and observe for a second.  Today started with 2 dys-regulated kiddos and a basketball rolling out of the garage at just the right second to reverse the door, forcing me to pull back up the drive to get the basketball out of the way and in doing so step on a large wad of gum.  nice. Its going to be one of THOSE kind of days.  Change your space I told myself.  Drawing a blank, well onward.   Off to picking up a poop pan, have 5 tons of dirt dumped on our drive + 8 yds of mulch, then off again to get K early and out of her routine which always makes for a great day especially being that we were headed to a new ENT doc.  The whirlwind appointment lasted about 5 sec. and ended with the word "surgery".  Well, not totally unexpected but enlightening in the fact that her humongous tonsils and adenoids might be part of the peeing issues we are seeing.  Wondering now if that might not be the only connection.  Barely make it out of x-ray before E2 plays Tarzan on the very expensive x-ray equipment and the cell phone is ringing off the hook, do i know where K is the school asks? Why yes, she is right here, didn't you get the note i sent yesterday??? Few min's later, call from the same number, strange, nope this time another contact from someone else at the school getting N listed for evaluation for the bilingual class (cheers in the background).  Off to pick up E1 and N at school just in the nick of time and avoid it if I could, or would, it just wasn't happening, K wants to go in...sigh....she really hasn't been back to the preschool she left earlier in the year due to the behavioral problems she was having there.  Yes, I tried to play it cool, but the second she walked in the door, it was clear the brain scramble was on.  I held her hand as we walked through her old classroom and this glassed look just came over her face.  Her old teacher walked in and I tried to give her the words for a polite greeting, but she was clamped shut, it was like returning to the scene of a massacre.  The kids came back and unbelievably, many remembered her name, even though she was only there for a week.  They came up to hug her which only caused her to withdraw further, ok, time to leave.  Nice seeing you all, sorry I almost poked your eyes out and pinched all of you! Off to RE class and a visit to the park that somehow resulted in every self inflicted  injury known to man (note to self - restock band-aides in the car),draw happy faces on all the kids hands as a reminder when they look down how others want to be treated,  home, margarita from scratch made lovingly with very old dehydrated limes, playing scantily clad paper dolls with the girls (seriously, they look like little hookers and they even give you some money to put in their hands like they just did a lap dance or something), conversation with E2 about how he will ask God to make me fast, then he decides to take back his request to God because he says I am already too fast (guess he didn't hear me wheezing at the park earlier), recapping the day and giving it to God.

Neuro Reorg Here We Come!

We got the great news yesterday that the practitioner feels that K could be helped by Neuro Reorg. After a difficult day back to school for her after at weekend at the grandparents, it was much needed good news. Our appointment is in early May and we are super excited about hearing what her thoughts are and getting more in depth feedback and information about the program.
On the school placement for N next year, we were able to network with a number of parents at the conference and got a LOT of great information including some unexpected information from one of the speakers who is an advocate for families with school districts. His information will be invaluable in our decision making process. In a nutshell, N is currently at a private Christian school that we love, but would be difficult, if she needs academic help going forward to come by, coupled with our concern that if she is in too far over her head with the very advanced academic program, she might develop, knowing her personality, a dislike of school. Our other option is to see if she qualifies for a dual language program at our public school. That would give her the learning in her native language but also build her English vocabulary, plus the resources are there for her if she needs assistance. Thinking we need to start a list of pros and cons. One thing we have noticed that some reasons for picking one school over the other are my hang ups not hers, for example, if she is not keeping pace at the private school, it is likely we would have her take kindergarten twice, while our younger daughter in the public school would move on to first grade. That bugs me, not necessarily her. I have not been able to pin point my exact issue with it, but it seems to point to the hierarchy of our family, i want N to be and feel like the older sister, as she can easily be bullied by K, and I think the grade level would add to that. N is already smaller than K and about 6 lbs lighter. But that is my issue, not necessarily hers. And how much the grade level would come into play with them at 2 different schools is questionable, the greater factor is probably their sizes and personalities at this age.
So, lots of stuff coming up in the next few weeks and I am hopeful we can do some blow by blow blog posts of the neuro reorg as we go along.