Hump Day

Wednesday, yes, I realize it's already Thursday, well in my time zone anyway....however  today really hasn't "happened" yet even though I am up and about.

A med change....the cardiologist called me at work Tuesday, evidently whatever went on with my ticker over the weekend was not a good thing and really indicated the medication was not working the way it should have any longer...so we are trying the "next" med.  My body is VERY sensitive to these meds, so we are starting out lower than the recommended dose.  Before "we" realized this, I was on one that nearly put me in the hospital.  I think if my GP had not intervened and demanded to speak with the dr vs the nurse it is exactly where I would have ended up.  Thankfully, my GP knows that I know my body and knows when I say something isn't right and it must be the new med, generally, I am right.  My cardio now knows the same about me...so we start out slow and gradually increase to try and avoid side effects. 

I am thinking 24 hours into the new drug that I am not liking it, but I will give it one week.  I go for another EKG next Wednesday.  Off the flecanide I did sleep better last night and my breathing was easier, however, after three good doses of rhythmol, here I sit at nearly 3 am and I have been up with strange symptoms since midnight.  My head feels like it is spinning, and it is worse when I am laying down.  I guess I could sleep sitting up...but when I have tried that in the past, I end up sideways anyway.  I've got some right side weakness too, so that is a little diconcerting, but it only happens with the dizzy spells...or loose brain attacks as we have come to call them around here.  They are just more frequent now than they ever used to be.  We are trying to determine if these are actually related to the heart conditions, or if the heart condition is in some way causing mini TIA's, or if this is totally a new, neurological issue.  My heartbeat is definitely more irregular.  Time...it's all a waiting game.

I have yet to sew this week, although I did put some lucious fabrics into my "cart" at Fabric.com while I was sitting here. 

Yesterday the case manager called to "explain" about case management...it's ok dude...not sure we plan to keep you anyway...that is a whole other issue...I have a list of complaints to tackle with an Easter Seals supervisor on that one.  I left him on hold because he called at work with a non-emergency question, and I had kids in the office to deal with.  He was concerned I believe about a treatment team meeting we set up...w/o him.  Sorry...the job wasn't getting done and I was having to be too squeaky of a wheel.  I'm also tired of hearing that my son has too high of an IQ.  I don't care how high his IQ is, if he can't function at home safely without 24 hour 1:1 supervision, then we need help.  Autism is not a fun thing, couple it with bi-polar and it can be and often is unmanageable...add in a brain injury and it spells disaster in real life.  Had we had the support for his autism we needed when we needed it w/o out the debate over exactly what kind of autism it was, w/o the arguement of school teachers trying to diagnose ADHD that is non-existent (it's the brain injury that causes those symptoms), and w/o the county trying to then blame his "symptoms" solely on the mental health issue, I am certain we would be in a completely different place than we are right now.  He would probably be at home functioning pretty well with needed supports and his siblings wouldn't be afraid of him.  They love him, but don't try to leave them in a room alone with him...they freak because of past experiences and then he freaks because they freak.  It's a sour snoball effect.  It's sad.  He's trapped, and so are we.

The twins are still sick.  I am not sure if we need to see the ENT or just a new primary care provider for them.  This one keeps giving them zithromax and seriously, Anna now sounds like she is developing pneumonia.  They are both still running low grade fevers which would go right along with the pneumonia theory for them.  We cannot go 3 months without them getting sick and usually go through at least 3 different antibiotics before we see any relief and they usually miss at least a week of school each time.  I will have to call the drs again tomorrow.  Anna has been up twice tonight coughing until she tossed her cookies.  It hurts.  I know it hurts her, and it hurts me to watch her.  I can't fix it.

Soon there will be an upper post....there has to be.....this is depressing me just reading what I wrote

2010...I promise to do better

Good golly...where has the time gone...Christmas has come and gone and I have posted nothing since Thanksgiving time.

We are still not a whole lot closer to getting Jamie placed.  We still have all the Level 4's to go.  I have to call one or two who are being particularly difficult....maybe I will tackle that today since my "good" serger seems to have gone on the fritz.  I am hoping it is simply a power cord as suggested by my "friends" on  http://www.sewingmamas.com/ .  I love that site.  A bunch of friendly, idea filled people.  I even got major ideas for all those last minute gifts I had to make.

Anyway...I was going to go to The Hughes Center for Exceptional Children in Danville, VA, but in the process of getting the twins ready to leave the house to go and visit, they decided that no one under 13 was allowed on their campue.  So, that has totally nixed the idea that Jamie might be able to be placed closely.  It's sad that he will have to be 6.5 hours away.  I'm not comfortable with him being that far away, but short of a spot opening up at FACT in Jacksonville, NC, we are stuck sending him to TN.  The center in TN is awesome, don't get me wrong, and we will be very blessed by the services he will receive while he is there...it's just that is it so far away.

Christmas was a total fiasco with Jamie.  We went Christmas day having been told by the dr that we could "carry" Jamie his presents, but it didn't happen that way.  The receptionist at the desk doesn't seem to care to much for us.  It's ok, her behavior has made the feeling pretty mutual.  So upon leaving I called the dr on Christmas day.  I suspect he was none to happy to have had his day interrputed by an upset parent.  He said he would take care of it.  The receptionist's attitude was no better the next day when we returned to have "special" visitation with Jamie so we could have "Christmas" with him a day late.  She even ended up cursing at Gary.  That issue remains to be settled.  It just seems that the longer he is there, the more issues that arise.

Well....off to play with my serger with a mind of it's own....and promises to keep better postings...I think a daily dose of writing would do me well.....

Another one of "those" days

Poor Jamie....

We did get "another" call from the hospital today. Jamie was put in isolation for near an hour for kicking a peer and a staff member (over his lunch tray) …so…it looks like he is not as stable as we thought…or anyone else for that matter. He's cycling again….first the argumentativeness kicks in, then the aggression comes on….his moods…well they will probably be way out of whack by mid week. They have rooms for that there. Here at our house, we have dented walls where he kicked and would bang his head. He tore the blinds out of the window in one fit. We are afraid he will go after a window some day and really get hurt. Can't put him in the only room in the house that doesn’t have windows either…that's two of the bathrooms and that's just plain not safe….not to mention that he weighs more than I do now and there is no way in one of his fits that I could control him enough to get him to his room where he could pitch a royal fit..

I wish I could move mountains to make what we KNOW needs to happen...to happen.  I wish I could wave a magic wand and it all would be the way it needed to be.

It's one of those things....I know that God has gotten us this far with him...finally to a dr who won't give up until he can get to Jamie somewhere that has the best chance to help him be what God intended him to be...  I have to keep the faith that this is all going to happen....I have to keep fighting for my son even if there is no fight left in me because he can't do it for himself.....

It's been a long few days

We have had a couple of pretty intense meetings the past couple of days.  The beginning of the week started off with Debbi receiving a phone call stating that the case manager had been told by the hospital's Social Worker that there was another upcoming court hearing next Thursday.  We sort of knew that couldn't be correct because that would make it Thanksgiving, and the courts are closed that day.

So, we first had to tackle Jamie's IEP as if he were getting released, the way his IEP was written and the way the school was set up, Jamie was destined for immediate failure and we refuse to send him into that situation.  So, we took the camcorder to the meeting, and had invited to the meeting, but not gotten confirmation back, from an autism specialist...and were very excited to see that she did indeed show up!  Truly a blessing as not nearly as much would have been accomplished.  Granted, there is still a LONG way to go, but it's getting workable.  It's amazing how accountable people become when there will be a permanent record.  But seriously, it did get tense, especially when one of the Sr. Administrator's for the county tried to tell me that Jamie wouldn't be taught on his grade level.  I stopped her in her tracks.  It is their job to teach him at his grade level in the setting in which he requires to show growth and success.  I think the school finally realizes we are not going to back down.  I am also equally as sure that they will be extremely excited to learn that they probably will not have to execute his IEP as he will probably go directly from the hospital to the residential setting.

We have received in writing a statement from the doctor, that he will not release Jamie to any program unless we as the parent's and him as the treating physician are in agreement that it is in Jamie's best interest.  I was floored when my husband passed that to me in yesterdays meeting.  After the meeting, and after all the confusion was dispelled, we got down to business...  The email below is one we have sent to MANY legislators and news reporting professionals late last night/early this morning.  It was suggested that due to the beauraucratic hoops that have to be jumped through to get a child placed out of state because no where in the state can truly help him, it would be a good idea to start lighting some major "political" fires.  We know our son is not the ONLY child out there like this, and every child deserves the best chance he can have...

'We would be interested in talking with any or all of you about our son and our journey through the MH/DD/MR maze. He is a twelve year old autistic, bi-polar child with CP. We too, like the story of the McLeod family featured in the Cary News recently, have had major issues with Special Education services in Wake County Schools. I (the mom) am also in a bit of a precarious position as I work for the school system. However, our bigger beef is with the whole entire County and its lack of support to parents of children with special needs and the lack of access to appropriate medical care. Our son is currently hospitalized at Holly Hill (since 10/20/09) after becoming psychotic in his second "therapeutic" foster care home where he was placed to help him learn more appropriate behaviors. His first therapeutic foster placement ended rather abruptly because he suffered a broken arm and received no medical care for 10 days. That is a story all in itself. It was investigated by a neighboring counties CPS department and quickly squelched; we suspect because the "foster mom" was a Wake County CPS worker.



Jamie has no place to go within this state. He is stuck in Holly Hill, where in two weeks time he gained 20 lbs, his cholesterol levels have escalated, and caused further issues with his already weakened ankles that he has because of his Cerebral Palsy.


There is only ONE treatment facility in this state that could take him because of his dual diagnoses….but they are full and don't know when placement will open up because so many step down facilities have been closed due to the dramatic budget cuts within MR/DD/MH services.


What we had initially been told would be a three week process taking about 20 hours per week to complete, has grown into a six to 8 week process as we have now learned that we MUST receive a denial letter from EVERY treatment facility in NC that treats children Jamie's age, regardless of what they are designed to handle. If they take mentally retarded children only, we have to have a denial letter, even though Jamie's IQ is still well above that level. If they only take children with sexually deviant behavior, we have to get a denial letter. Most all of the facilities in NC treat children with Mental Retardation, which our son does not suffer from…his IQ is 103 at last testing earlier this spring, or majorly deviant type behavior, which again our son does not yet exhibit. He definitely can get out of control, but his behavior is far from deviant. If even one place says they have a bed and they are willing to take Jamie, not because they truly think they can help him, but because they are greedy for Medicaid $$, we have to either place him there and let it fail, or send him to the facility we have found out of state that can help him at our own expense. Now, even IF we get all 23 or so denial letters in writing, which requires submitting an admissions packet to each facility because they won't give you a written denial letter until you submit a packet, Medicaid may still deny him placement at Camelot for Kids in TN, even with the approval we have already been given by the LME (local management entity) for this type of long term level 4 placement. At this point we have to go to the DMA (sorry I did not catch what that acronym was for) to attempt to demand that the DMA insist that Medicaid pay for Jamie's treatment. Then once all that is done and approved, we have to have some "interstate compact agreement" signed off on by the legislator (whose name we were not told even though we asked), and that is another 80 page packet and can take up to another week and a half. North Carolina does not like to sign off on these agreements because the revenue expended remains outside of the state. However, they are doing nothing to provide appropriate treatment facilities within the state. In fact, many have been shut down leaving little to no wiggle room for a child as complex as our son.


We seriously understand why the case manager doesn't want to do it, but it is also seriously our son's ONLY hope at a REAL chance to become a successful individual in life. It MUST be done. There can be no more quick fixes for Jamie. His psyche can't handle it and frankly, neither can our families. Our son has been out of our home for most of the year, where we had NO clue of his living conditions. Turns out, at the last foster home in which he was placed through Caring Family Network, "his room" was what truly appears to have been an added on "storage" room with a mattress ON THE FLOOR…a mattress…no frame, no box spring…a mattress…in a room so crammed full of the foster family's "stuff" that the door would not open all the way. That is how our son lived and the foster family was getting paid a pretty penny to keep him from the insurance and we were getting billed on top of it!


My husband and I have decided it's time to go to the press and to seek the assistance of any attorney ready to take on the system…because it is all wrong. We are a blended family of eight on a limited income due to my husband being disabled due to a car accident some 18 years ago. Two of our other children are also on the "spectrum".


Some attention, somehow, someway, has to be brought to this. The doctor did tell us today he had never, in all of his 30+ years at the hospital, meet with parents so set on advocating for what was best for their child. Our thoughts on that were…."what happens to all those kids who do not have parents who either don't have the time, the ability or the where with all to stand up to the system and fight for what is good and right and appropriate"… Bottom-line, the system has to change, and services need to be more readily available for these higher functioning, complex children. Granted, Jamie is probably the most medically complex child you will ever meet along this spectrum, but we know we are not the only family facing these difficulties.


Our child can wait no more!"

SO, if any news reporter or political figure reads this blog, or if any lawyer interested in piloting change for the backwards system, wants to contact us, please do....we will respond and we will be your forefront.  We are done with accepting that our child is "too complex".  Whatever happened to the hypocratic oath these medical professionals take?