Kingdom Arrows

Verse 3, from the hymn, Your Great Name We Praise

The classics I have read over the last few weeks are A Tale of Two Cities and Jane Ere, both books having a character who struggled with some type of mental illness.  Mrs. Poole and Dr. Mannette offered plenty for me to chew on as we are awaiting the particulars of the mental illness my daughter has. 

As I have gone through this journey I have felt many emotions: numbness, anger, loss, loneliness, sadness, grieving, despair and even anguish.  I have learned several things about God and emotions through this. 

1.  Sadness and grief are not the same thing.

2.  One can go from despair to anguish of spirit. 

However, I also have learned more about the Psalms than I ever understood before.  I have learned how cynical I am to God’s movement and plans, and can see what idolatry and assumption is in how I normally live my life.  The word presumption also has taken on new meaning.   I see much more of my arrogance in how “I” live life and “my” choices. 

Yuck!

But, the Lord is growing me and my faith daily. 

So, that is what is going on in my world, now to the update on Kae-Kae.

Dan and I met with the psychiatrist yesterday and it went well.  We don’t have a plan or diagnosis, but to find a doctor who says, “I can help here,” is remarkable.  You have to remember that is is 7 weeks ago today that she went under the futon.  Dr. Gass will be coming to our home tomorrow night at 10:00pm to meet with Kae-Kae.  He will be making his first house call EVER!  He wants to see her and talk to her when she is coherent, so as to get a better picture of what type of phobia or anxiety this is.  Praise God for this doctor.  He has a hypothesis right now, which does involve some serious medications, but he did say it may take just small doses of them to help her. 

The other profound thing that Dr. Gass said is, he does NOT think Kae-Kae has autism.  I know this is  a relief for more than just me, since everyone who has known her over the last 9 years is racking their brains trying to figure out how she could have autism.  Remember her playing “Puck,” in A Midsummer Night’s Dream, along with all the ballet, flute and piano recitals?  Also, her smile and eye contact that she always has had?  He thinks this paranoia/anxiety has been going on A LONG TIME, and is actually what has “caused” her learning disabilities.  He thinks once we can treat the psychiatric part, that she will begin learning again.  Obviously, we have years of remedial work to tackle, but there is hope. 

So, here are the prayer requests for our family:

1. The psychiatrist will have great wisdom in the best medication for Kae-Kae.
2. The meds will have NO negative side effects (God can do that, you know).
3. We can pack and get moved and take care of her in a way that does not push her too far emotionally.  We move in 2 weeks and not a thing has been packed.
4. Wisdom and money for whatever type schooling we choose for her for the fall.  We are looking at a Christian school that I REALLY like, but will not take her if she is not psychologically stable, and it may just aggrevate her anxiety since it is fairly large and far away from home.    The school that will take her, I don’t really want her to go to- it costs 25% of Dan’s salary for the year and has kids who have worse learning issues combined with many behavioral issues, but they are willing to work with Kae-Kae’s psychiatric issues. 
5. Confirmation that the therapist/counselor we have chosen is the best for Kae-Kae and our family. 

I thought I would leave you with this picture of Kae-Kae.  This is what we see all day every day, unless she is swinging for a few hours.

I have to say that our appointment with the Developmental Pediatrician went well. For the second time, we had a doctor who wanted to help, but she could not. So, the referrals began. She stated we are in a crisis situation, and need immediate intervention. There is no doubt about that.

So, we were referred to the local psychiatric hospital. We were told it was to be evaluated for either in-patient or out-patient services. Our understanding of services and theirs were very different. We thought it meant putting Kae-Kae in to observer her, and seeing a psychiatrist with a little counseling. Their idea was bring her in for a while, and try to get her talking in groups, and eventually seeing a doctor sometime. From the minute we walked in, things were going down hill. However, the climax was when the social worker, who was conducting our interview (that is right, no psychiatric type person) asked, “How much parental involvement do you want to have while your daughter is here?”

Obviously, she has not met a homeschool mom.

End of sentence.

We prayed hard, smiled and nodded our heads alot. And got the heck out of dodge. WITH OUR DAUGHTER!

So, we are back to square one. The added knowledge we have is that Kae-Kae does qualify for an indefinite stay at an inpatient mental hospital. However, we still have not seen any of that kind of doctor, which is who I want to see before anything this dramatic happens. Especially since my daughter would be in a semi-private room with two other girls who are 13-18 years old who are mostly “system” kids. That hospital does not know about our time as houseparents. I know what 13-18 year old girls stuck in the system look like.

The good news is, I think, that about 10 minutes after we were speeding away from The Horrible Place, our doctor from this morning called. She was appalled by what had happened, and apologized, and is getting us into a clinical psychologist within 2 days. Again, I am not really sure how this helps things, but it is nice to have a doctor on our side. The other thing that happened is we called the psychiatrist Kae-Kae has an appointment with in six weeks, and Dan grovelled and pleaded on the answering machine for him to see us sooner. He has gotten the best recommendation of all of them locally, so we are praying he will help us sooner rather than later.

We do hope to pick up our little people today.  It will make caring for Kae-Kae more complex, but they need to come home.  This is the longest I have ever been away from them, and it is important for us all to know we are a team and we are fighting together.  I don’t want my children to forget each other.  We do tell Kae-Kae all the stories from the day, so she still feels connected with the littles.  It is harder for them to feel connected, since it is so abstract.  Kae-Kae comes up after they are asleep.  They have not seen her upright and semi-engaged since June 5.

Thank you for praying.

It is hard to have nifty titles when life is basically the same from week to week.  I am doing some lesson planning for the fall and even purchasing Kae-Kae’s schoolbooks, in faith that she will be at a point to use them.  Maybe soon I will do the BIG REVEAL on our choices for 2010-2011.

For now, I did want to report on our pediatrician visit last week.  Remember, we fired our last one, so we needed a new primary care since EVERYTHING we do now requires a referral.  This doctor sees many patients who are on the spectrum and also is very skilled at referrals, since he does see alot of atypical kids.  So here is his verdict, remember he is not a specialist….

“She has a tremendous psychological problem.”

Good to get that off my chest.  You never think your kids might need a psychiatrist, and that is exactly who we are being referred to.   I actually have had to figure out the difference between a psychiatrist and psychologist.  We already have been working with a neuropsychologist, so I had kind of figured that part out. 

Our developmental pediatrician appointment is this Monday, so hopefully we will get a second opinion about that and see what a different doctor has to say .  However, you have to remember all of the therapies we have done have overstressed Kae-Kae, even though every doctor has told us it should not happen.  We stopped all therapy on April 29.  So, we are gun-shy about therapy.  As for medications, there is a BIG chance she will be put on some type of anti-anxiety meds, since some schools of thought are that is where the selective mutism is coming from.   There is the other school of thought that the mutism is coming from non-integrated reflexes (that is where Dan & I stand).

So, when you think about your child having some sort of psychosis, you have extreme guilt.  You replay every event, school situation, curricular choice, extra-curricular change or  move.  What part of Dan and I, in our life as parents and sinful people, could have been the thing that tipped the boat?  Is there anything we can “fix” that could bring Kae-Kae back?    I could write five blogs about all God is teaching us through this trial.  I could write five more blogs about all God is convicting us about in our pride, selfishness, arrogance and how we have lived life up to this point.  Click here to see a previous confession along the same vein.

So if you would like some prayer points:

• Clarity for the doctor and our appointment on Monday with the Developmental Pediatrician.  Also a doctor that will work to try to get to the bottom of this.   Also, that she will be compliant while there.  For the first time in my life, my compliant child refused to do what the doctor wanted. 
• We are being told for these unintegrated primitive reflexes, OT can actually aggravate them, and that PT is the way to start.  We need huge wisdom for that.  We know little about all this. 
• The MRI got moved to tomorrow, Wednesday, so prayer that we can get Kae-Kae there.  She has not left the house in six days. 
• That she can begin to read again.  It has been 10 days since she read.  She now stares at a point on the carpet for about 8 hours a day, until she moves to the computer at about 7:45pm. 
• Another life decision our family is making, which seems to be in the best interest of all of our family members, but that feels overwhelming right now, and has long-term ramifications.  I do not feel up to the task- it is physically and emotionally draining. 

I would like to recommend 2 books that are helping me right now, both are a comfort and conviction as we go through this trial.

If you purchase through my site I do recieve a tiny amount of money from Amazon since I referred you.

The break from blogging has come because of the time, energy and mental focus I have needed to put into my first born daughter, Kae-Kae, as she has been going through a host of therapies for her learning disabilities.  We knew in March that the journey would be tough and sacrificial, since her main therapy provider is located an 1.5 hours away, with required weekly visits.  What we did not know is that starting Vision Therapy would send her on a downward, unexplained spiral.  We have been slowly putting all the puzzle pieces together, and think we have some idea of what has happened now.

It seems that the Vision Therapy (VT) was sensory overload for her system and it began to cause her to stim, as in an autistic sense.  First we were doing VT for an hour a day, but within two weeks, only 3 minutes of the at-home exercises would send her into 4 hours of stimming and non-verbal times.    In order to “fix” that, we were put on the Listening Program, where she would listen to 30 minutes of prescribed music,  two times a day.  That also was too much sensory overload for her system, too.  After five weeks, we stopped the Listening Program.  But, the stimming did not stop.

Sometime during that 5-7 week time period, we began Cranial-Sacral therapy, by a person trained with the Upledger Institute.  This was supposed to help with the over-stimulation, and to integrate two of the primitive reflexes, that babies are supposed to integrate by 5 months old.  We had discovered that Kae-Kae’s fear paralysis reflex and moro reflex were not integrated, and that can cause huge learning problems.  However, it took about a month, for us to realize we needed to reduce the Cranial-Sacral therapy to only 30 minutes a week, for it to not over stimulate Kae-Kae. 

Over the last two weeks, we have begun to learn of a program called Brain Balance, which has a book written by the developer called Disconnected Kids.  It seems like this was the missing puzzle piece.  But, the Brain Balance Center told us that Kae-Kae was not stable enough to come in for all the tests, so they told us some things to do at home.  During that time, we found out that our local chiropractor is trained in BB and is helping us at home.  Part of the BB program is diet, supplements, chiropractic adjustments, and at-home exercises.  However, after only one week, we realized that the BB exercises are doning the same things that all the other exercises have done, causing stimming and other things that are horrid for a 12 year old to have to go through.

Yesterday our Developmental Optometrist told us of another program called the Sensory Learning Program.  The closest one to us is in Atlanta, but it involves staying in Atlanta for 12 days, and having a one hour treatment a day.  The cost is more than the last Camry we bought, and as always there are no guarantees.  It involves light, movement and sound to help children who are sensory overloaded.  It is supposed to work like a jump-start to a car.  It will not mean we will be done with therapy, but that we can get Kae-Kae to where she will not physically over-react to whatever stimulus is offered her.  We should be able to go back to Vision Therapy and even complete Neuronet, for her auditory processing disorder if this therapy does what it is supposed to. 

So, please pray for wisdom if this is the right step.  We feel we have had so many mis-steps along this journey.  We have tried to do what we felt like the Lord was opening the door to, at each point.  The therapies recommended by all our professionals are typical protocol and they all have said they have never seen another child respond like this to the therapies.  We do feel our doctors and therapists have had our best interests at heart, but it has been hard to be batted around like a ping-pong ball.  This has been the longest, darkest valley our family has ever walked through.  At the end of most days, I am numb and unable to form sentences or have much emotion.  Our friends and family are supportive, but everyone wants more information about why and how this is happening.  I do not often know the answer and this is frustrating.  The other side of the coin, is that friends and family may see Kae-Kae at a time when she is “better,” and they think we are making a mountain out of a mole-hill.  They are not at home when she is stimming and all the other things I am not going to embarrass her by typing here. 

I will be trying to update the blog at least weekly, so everyone who wants to have an update and pray can do so. Presently our biggest prayer is for wisdom to know which direction to step regarding the next therapy.  We are fearful of starting another program that we have to stop after a few tries since she can not manage the exercises.  We are also trying to get into a neurologist, but that is a two month wait.  All of our professionals are warning against this, since they feel the neurologist will not get a true reading of our daughter, since all this stimming stuff is just in the last three months. 

Thanks again for your prayers and support.