HELP POLICE!

The alarm rang at 6 am and everyone sprang into action instantly anticipating our day – okay – not really – the alarm rang and I moaned and everyone else lay motionless.  I didn’t sleep at all last night – anticipating leaving is never easy & this has been a very eventful trip.  With quite a bit of coaxing the dog and I finally got everyone out of bed & the start of our day had begun.  My husband went to the hospital to pick up my son and bring him back to the hotel – we were meeting downstairs in the restaurant for breakfast.  The girls and I had everything completely packed and ready to go by the time the guys had returned.  Breakfast went off without a hitch – everyone got along nicely - only one spill and I actually got to drink my tea while it was still hot – WOW!  We were the picture of a normal family – ahhh!  Don’t ya just love fairy tales!  I do!

Now that breakfast was over it was the inevitable time to take my son back to the hospital – so my husband went to check out of the hotel – the children and I were waiting by the door.  He was walking toward me with “that look”  Oh no – I knew things were going too smoothly – what now?

“What’s wrong Baby?”  I asked.  “We need to get up to the parking garage – there is  a police officer at the front desk saying that a van on the 2^nd floor was broken into” – “Now honey – the 2^nd floor is very large with lots of vans” – still there was something in the pit of my stomach.  Yep – you guessed it – we rounded the corner to find our van with the front door open – glass everywhere from what use to be the door window and a present from the unhappy thief – a rock. (I say unhappy thief because there wasn’t anything in the van for him to steal).   Two security guards were standing there surveying the situation.  They radioed the front desk – the police officer had already left, another would have to be called for a report to be filed – we would have to wait & wait & wait.  My little chickadees began to get their feathers all ruffled – truth be known –  I wanted to let my feathers be ruffled too – but Mommy hens do not have the luxury of letting their feathers be ruffled over such minor annoyances.  So instead, I calmly said “this is not that big of a deal, nothing was in the van for a thief to steal”  Then my husband suggested that the children and I wait in the lobby until the report was taken and he got ahold of the insurance company.

After we got all that taken care of, we took my son back to the hospital and made several phone calls to get the window fixed – it’s Memorial Day – no one has the exact piece of glass – it has to be ordered – can’t do that till tomorrow – of course.  So instead I dropped my hubby at Home Depot to get some plastic and I took the girls to Hobby Lobby while he fixed the car up.  (Hobby Lobby – we do not have these in the part of Florida that I live in – LOVE this store!!!!)

When I came out I was nothing short of amazed!  I’m not sure amazed is even the word.  I went in expecting him to cover the hole with a plastic sheet and some duct tape – what else is there to do right?   Okay obviously I know very little about these things – he had purchased Plexiglas and some hand cutting tool and shaped a window. – It looks just like a glass window!  He did have to trim it with duct tape – but it’s Plexiglas – not a plastic sheet – it’s a window! - Honestly I’m beginning to think there is nothing this man can’t do. J

So we are now back on the road and I’m thinking “whew—I’m glad our adventures are over for the day” (queue music please…dun dun dun dun dunnnnnnnnn) Sure they are…  We are just driving and all of the sudden my window (passenger side) goes down – for no apparent reason.  And what’s worse – it will not come back up.  Okay – at this I do laugh – it’s just too funny -- why is this happening –   so hubby used what Plexiglas he had left (about half a windows worth) and the rest is made of – you guessed it a plastic sheet.  But at least he can see through the window and my hair is not whipping all over the place.

It’s 8:00pm and we are driving through Mississippi.  I am NOT making the mistake of saying that I’m glad our adventures are over again!  But I am hoping that we are going to have a calm evening.

Dancing in the chaos,

Amy

Mommy Pride

I am feeled with pride at the accomplishments of my oldest son this weekend.  While we have been in Arkansas, my son has been at Youth in Government Junior Assembly in Florida presenting his bill.  He presented it in 2 different committees and then it passed to the General Assembly where it was debated and then voted upon -- his bill was passed!  When I say "his bill" - I mean the bill he wrote and researched himself.  He also came in 2nd for the "Outstanding Statesman Award".  We have been texting back and forth all weekend in between sessions -- I'm so glad for technology - what did we ever do without it? 

My youngest son's pass went much better today.  We had no unexpected "plumbing problems" :) .  And his behavior yesterday was ....well let's just say less than desirable - it was much better today.  Structure is key to behavior for mentally ill children -- there wasn't much structure yesterday.  But that's part of learning -- life doesn't always hand us structure - no matter how hard we try.

We leave tomorrow.  We requested and were granted a breakfast pass.  I think this will be a nice note to leave on.

Thank you everyone for all your prayers - I appreciate them so much!

Dancing the Mommy Pride Dance,

Amy

My Cup Overfloweth - Well Sort Of

It's Labor Day Day Weekend and time to go visit my son in residential.  Through a course of unplanned events we decided to take the dog with us.  We contacted the military liaison for the hospital and he said it wouldn't be a problem - so off we went - my husband, my 2 daughters, myself and the dog.   (My other son was going to a Youth in Government function).

Eighteen hours later we arrived at the base TLF facilities to be informed that there was some form of miscommunication somewhere because they did not know there was a pet coming - there were no more pet rooms available.  UGH!-- Okay -- regroup, this isn't really that big of a deal - just find a hotel that will take pets.  I was overcome with disappointment -- the facilities on base are like an apartment -- it's much easier to "simulate home life" from those facilities than a hotel room, oh well.

We called many hotels and finally found one close to the hospital that took pets and booked it.  It was a well known chain, so we were pretty comfortable in doing so.  The next morning we went to family therapy with my son and then brought him back to the hotel room. We all sat down to eat lunch together and the toilet began to overflow & I mean OVERFLOW!  It wouldn't stop.  We called maintenance and my husband turned off the water to the toilet because the water had flowed out of the bathroom and the carpets were flooded.

Obviously we requested a room change - the carpets were soaked!  The front desk told me that no rooms were currently available but housekeeping was cleaning the rooms and one would be available shortly - so my husband took the children down to the pool and the dog and I stayed in the room and waited for the call to say our new room would be available - at length it was ready.  We moved into the room right next door.

While the kids were playing and my husband was gone getting dinner I heard something. I said, "what's that sound - did someone leave on the shower?"  My youngest daughter got up and went in the bathroom - she came out and said, "Mom the roof is leaking"  Leaking was an understatement.  The roof was cracked and there was a steady stream coming through -- UGH!!!!  & GRRR at this point.  So I called the front desk and the manger answered "This is George"  "George - my roof is leaking"  I actually felt bad for him - grr went quickly away -- he said he would send someone right up.  RAD child was already on the phone telling Daddy all about it.

By the time Daddy came home with the pizza he also had us another hotel reservation :).

Well, the hospital told us to "simulate regular family living" we did our best -- overflowing toilets and leaky pipes - doesn't get any better than that.

Wonder what will happen on tomorrows pass.

Dancing in the flood waters,

Amy

A Rough Night

Last night was rough.  I laid in my bed all last night full of anxiety, so I prayed.  I will say all of this with my son has taught me to pray.  I still do not pray like I should, but I sure do talk to God a lot more than I did before.

Yesterday evening was "family therapy".  My husband and I go to my son's "Florida therapist" office and my son son meets with his therapist at the hospital and we all "conference call".  First all the adults meet together to discuss the week then we bring my son in - last night my son did not get brought in - we spent the entire session brain storming.

I am allowed 3 phone calls a week for approximately 10 minutes apiece.  Saturday he was having a meltdown  so he was not allowed his phone call.  They did let him call on Sunday when he had finally pulled it together.  Last night the same thing happened - I called and was told "we are not denying his phone call because we are not allowed to do that - but he really can't talk when his behavior is like this"  And they are right - he can't.. he called in a couple hours when he had calmed down.

He only seems to do this when it gets close to time for us to visit (we are going up this weekend).  It drives me crazy!  It puts my mind in a whirl going into all kinds of directions.  Does he not want to see me?  Is he just anxious that he will not be able to earn a pass?  Does leaving the hospital grounds cause him anxiety?  Is he just testing the limits to see what he can do and still get a pass?  Why exactly is he acting this way -- mental illness is about to drive me crazy!

I want him to get better so badly - the progress seems so slow at times - the hurt is so deep.

But this too, I will do my bet to give to God - hopefully I will not snatch it back before the end of the day.

Anxiously Dancing,

Amy

worry

After I told my children I was writing a blog, they each decided they wanted to write one too.  My son decided he wanted to write one about life with a RAD brother.  To begin with I didn't think it was such a good idea - then I decided it would be good therapy for him.  He could keep it a secret blog like I did in the beginning with only strangers reading it.
Then a couple of days ago he asked the dreaded question, "Mom, can I publish my blog to my facebook like you do?"  Fear of him being hurt engulfed me - this is not something I wanted to see him do.  So I sat down and had a "heart to heart" with my baby.  I reminded him about when it came out that his brother had a mental illness.  He knew that we had to leave one of our homeschool groups we were in because his brother was not welcome in it.  But he did not know the full extent of everything.  So, if he is going to put his heart on the line, he needs to know what he is doing.  I shared with him how to this day there are a couple of women in our group that when they see me they turn around and walk the other way (hard to believe I know - but it's happened too many times now to be a coincidence).  His little heart broke as he realized the reason that a friend that once came over our house that no longer does.  Sometimes mothers do not want their children associating with anyone in the family.  I explained to him that he is taking a big chance - "some people may not want to be your friend anymore once they know."  His response surprised me.  He said, "then they really are not my friends, are they?"

He asked me why Christians responded the way they did when they found out about his brother.  Some of these people are really good Christians.  "Well, I've had a long time to think about this.  I hurt for a very long time over the way the Christian community responded to our situation.  I think I understand a little better now.  People fear what they do not understand.  Especially in spiritual realms.  Mental illness rocks our image of what the Christian life is supposed to be.  Typically - we just can't "pray it away" or the afflicted doesn't die.  So the problem doesn't go away -- it stays and it serious.  The Christian community can come along side a mother of a terminally ill child - but a mentally ill child -- well that's a different matter.  It rocks their world.  It's totally out of their comfort zone.  I think, just as God is using your brother to teach us, He is also using him to teach others.  None of us are perfect, we are all just learning."

He agreed and said he still wanted to post his blog.  So he did.

Dancing with worry,

Amy

6,570 days

A couple of years ago there was a Sea World commercial that made a lasting impression on me.  It showed a couple of kids playing with their parents at Sea World - the narrator said, "There are 6,570 days of childhood; which ones will your child remember?"  Wow! 6,570 days - when it's put that way it really doesn't seem that long.  As parents we are given a very short time to shape the ideals & morals of our children.  Kind of gives new meaning to when the pastor says "they are not really yours - they are God's - He's only loaned them to you for a little while."

I'm not trying to imply that we do not have significant influence over our children when they are grown - but it's not the same.  Now is the time to impart whatever is most important to us -   this is the molding time.  What is your goal for the end result - it comes fast -- we need a plan.  Today I attended a high school graduation for a very dear friend's oldest daughter.  I absolutely love this family and her daughter has grown into quite a beautiful young woman - on the inside and out.  It didn't just happen - my friend raised her daughter with the end result in mind.  I love watching her parenting style - she parents with purpose & love.  I aspire to do the same.

6,570 days -- by the time they are 9 years old you only have 3, 295 days left.  Some of us start with a shorter time - I adopted one of my sons at 6 years old - that's 4, 380 days until he becomes an adult by legal definitions.  Many of you have done the same.  6,570 days (or less) to impart all of me to my children - that's a huge job!  May I be worthy to the task.

God has given each of us that are parents a wonderful gift of 6,570 days - may we cherish each one of them.  May we not just be overwhelmed with the task - but also enjoy the wondrous gift we have been given.

Dancing in awe of my 6,570 days,

Amy

What is RAD??

I know many of you are wondering "What in the world is RAD?"  I am only going to touch on the highlights in this blog - but I really encourage you to view www.attachmenteducationnetwork.com for a more comprehensive look on attachment disorder.

Basically when a young child is traumatized (abused, neglected or has had multiple placements) it impairs brain development.  The part of the brain that deals with emotional attachment is damaged, thus inflicting a whole host of undesirable symptoms -- the worst of which is how hard it is for the child to attach.

I do want to stress that there is hope for these children!  They need specialized therapy with a therapist who understands Attachment Disorder.  They need an extremely structured environment with consistent firm, loving parenting.  One does not parent these children the way other children are parented - they need firm boundaries so they can feel safe.  They need training in how to be empathetic - how to love and receive love.  These were basic skills not given to them as babies - we have to do that now.

Is this a spiritual problem?  Well I believe that Satan preys on our weaknesses.  So as with any area in our lives that we are weak in -- yes this can be a real spiritual battle.  My friend Tracy and I were talking about this subject just the other day - she brought out a very good point.  Satan is at the throne of God "accusing Christians".  As parents of RAD children, we are constantly being accused by both the child and others who do not understand.  Our child accuses us of everything!  People listening to our child will sometimes accuse us of the very thing they are saying, or we are accused because we parent this child differently than our other children OR we are accused because people do not think we are good parents to our other children.  Because many health professionals do not understand RAD - we are even accused by them.  So then we understand that this part may very well be a spiritual battle.  But in this too - there is so much hope because we know who to turn to especially when it's a spiritual battle.

What I really want to stress is that there is so much hope for these children!  It is a long journey - but worth it in the end.  These children can learn to love and be loved.  They can learn how to be important members of society and loving members of their families.

Dancing hopefully,

Amy

Feeling a Little Brave Today

I spoke to the children today & told them Mommy had been writing a blog -- they already knew.  They even knew the address, so no surprise there.  I have been a bit apprehensive to share my blog with everyone.  Do I really want to put my heart on display for all to see?, share my dirty laundry with everyone (as we use to say growing up),  & take the chance at being shunned yet once again?
The answer has been given to my prayers a little while ago - I just have been slowly getting into the water - easing myself in (write the blog - only tell a few people) before I jump right in.
Why would I want to share all our "dirt" with everyone?  Well the answer is really quite simple.  It is my desire for God to use our situation - It kind of makes it difficult for Him to do that if we keep everything a secret.  God has come through for us - time and time again - and yet we only tell a few select people.  This is my way of shouting from the rooftops God's unending love and mercy.  We live a very interesting life - we constantly have to rely on God - if our struggles can somehow help you with your struggles - then I guess that would be the "why" of being so open.
I believe mental illness touches many of our lives - but it is a very taboo subject -- especially in the church.  It makes us uncomfortable to talk about - because there doesn't seem to be any quick fixes.  But the fact of the matter is that Jesus died & rose for the mentally ill just as much as He died & rose for us. 
This is an account of one Christian family trying to stay "sane" in an "insane" situation.  It's just us learning to dance through the storms of life  -- I hope it will help you dance too - I hope you will decide to dance with us.

Really - Homeschool - That's Their Answer?

Yesterday I had a terrible migraine.  I took some medicine and tried to take a nap.  When the migraine was finally starting to subside I could hear my two older children and their father having a conversation (prompted by the Cosby Show).  "But Daddy - are you serious - you really wouldn't get remarried if mom died?" "No", he emphatically replied - "I would want to always be miserable" Then one of the children told my husband - "But Daddy you would have to get married again - otherwise we would have to go to school!" "Yeah!" The other child said raising their voice.  They then began telling their Daddy all the reasons they shouldn't be made to go to school.

I sat on my bed in amazement.  Seriously!  This is the main problem to my children if I died - they couldn't be homeschooled anymore???  To begin with, I must admit, I was quite insulted.  I am more than just a homeschooler I thought!

Then as I sat there I realized something that had never occurred to me.  Homeschooling my children has always been important to me; I never realized it was also important to them.  When we started homeschooling, because of a medical condition; I did not feel my daughter was socially ready for kindergarten.  I wanted some more time to work on social behaviors - the academic part was easy.  Then we continued homeschooling because she became involved with gymnastics.  Both she and her brother were on team, so there were many hours at the gym.  I wanted time with them that I did not feel I would get if they spent all day at school and all afternoon and evening at the gym. 

Somewhere in the midst we had another child and adopted a 6 year year old.  Quickly it was clear that I needed time to help this child merge into our family.  The 6 year old had attachment disorder so homeschool seemed like the most viable option.  I am here to tell you - it did not work very well.  At the time I had no idea what RAD was.  He took every second of my time; my other children were left with nothing.  So we came to a crossroad - I could homeschool him or my three others.  My husband & I decided it was to be the three others - for bonding reasons.  When my RAD child came home from school he took up the majority of my time -- I wanted to make sure my other children got some of me, so homeschooling them & sending him to school seemed to be the best choice.

When my RAD son came home from his first residential treatment (he's currently in #2 - hopefully the last one) his anxiety was extremely high.  Everyone agreed he probably would be back in a crisis center in a matter of a couple of weeks if we did not find a way to reduce the anxiety -- so the decision was made to homeschool him also.  It had been a couple of years since he was homeschooled, I knew the pitfalls from before and made a commitment not to let him monopolize all of me this time around.  It took a lot of effort, but homeschooling actually was the right choice .  It gave me extra time to bond with him and create moments that all the siblings could bond together.

The epiphany that came to me sitting on that bed was this:  For us, homeschooling is not something we do just during "school time".  It has become a way of life - one that I (& evidently my children) love.  We have been time period camping to study time periods, my two oldest have flown an airplane when we were studying aviation, we play learning games all the time & we learn to speak intimately with one another. We learn what the needs are of one another and pray for them (just to name a few).  I would not give away the precious bonding times we have experienced through homeschooling for anything -- they are what keep me going when I just want to throw in the towel and send everyone to school.  Homeschooling is not about only the academics - it's about taking those academics and teaching "family".  I AM NOT saying you cannot teach "family" without homeschooling - I'm saying for US it has been a viable & wonderful way of teaching "what family means to us" to our children.

Doing the "mommy dance"...

Amy

What am I Doing to my Other Kids?

Recently I answered the question "what am I doing to my other kids" from another RAD mommy.  This is a question I asked my self a lot in the past.  I want to share my response in case their is another RAD mommy reading my blog.  I hope that it brings you some encouragement.

"I think we all know what you are talking about. My son has done significant damage to my other children and for a long time all I did was worry about what I was doing to my bio kids. This year we came to a crossroad - my son is extremely dangerous at times so we had some hard decisions to make. We ended up sending him to out of state residential treatment. What has amazed me is how much my kids miss him now that they have had a little respite. They pray for their brother and my kids can (and have) taught many other children about mental illness. Our bio kids have something valuable - they understand how to love when the going is really tough -- they understand that love is not always a feeling, but many times a decision. They have a strong since of family and what you do for someone you love. Don't short change yourself - you are teaching your other kids to be incredible people - you are teaching them how to grow through pain and not give in to it. They are learning things many adults never will. Take heart - you are in the midst of the storm so it's hard to see the rainbow - but it is there."

Dancing with my kids....

Mother's Day

Mother's Day was bitter sweet for me.  I woke up to breakfast in bed.  The kids were really sweet.  They were trying so hard to make me happy - so I spent the day with a smile on my face  & tried really hard not to have a pity party that all my children are not here.  I succeeded pretty well. We spent the day at the beach (as is our tradition) and I watched my beautiful children play (all but one).  

The beach always has a calming effect on me.  It's one of my favorite places to be.  I love sitting on the shore, listening to the waves and watching the water come rolling in.  But the water only comes to a certain point - God keeps it from coming in too far.  It's a visual reminder to me that He has everything under control.  It's very comforting to me. 

I received a call at night from the nurse - they were allowing my son to call for Mothers Day (usually we are only allowed three times a week)  Quickly I realized he is not manipulating - he truly is having a very hard time this week being away from me.  It's always hard - this week seems to be worse.  She said they almost did not let him call because he was acting out so badly.  He spent most of the phone call crying ( we were allowed to speak for a whole 5 minutes).  He asked if we spent the day at the beach - it seemed to really hurt him that we did.  Life usually revolves around him here at the house - it's nearly impossible for it not to between all the medical and mental appointments (therapist, psychiatrist, speech therapy, occupational therapy, pulmonologist, GI doc, nutritionist, behaviorist -- to name a few- you get the idea).  I think it's hard for him knowing that life is going on without him being the center.  Add into that "he is just a 12 year old little boy with the same emotions of any little boy - he misses his mom."

My husband has put in a request for detail for 90 days.  If it gets approved we will be spending the summer in Arkansas - I hope it gets approved.  He will then be working in Arkansas for 90 days. This has been hard on everyone my son being so far away.  The therapist is afraid that with his low understanding - she's not sure he can get past being so far from us - to him it just feels like he's been abandoned again.  Going up once a month just isn't doing enough, but we simply can not afford to go more often - hopefully this detail will be approved so we can go on visiting day every week.

Like the waves crashing on the sea - God has this under control too.

Dancing to the sounds of the waves crashing on life's shore....

Our Story in a Nutshell

I just got off the phone with my son.  He is in tears.  It seems he made me a Mother's Day present in school today and he is really upset that he will not see me on Mother's Day.  (At least I think he's truly upset about this - sometimes it's hard to tell the difference between manipulation and reality)  He's had a rough week this week - lot's of aggression.  He wants to leave this facility very badly and it's really hard for me to have him there.  However, it's the best place for him -- tough love is much harder on the person giving it than the person receiving it. 

This is our best shot at recovery.  RAD children are masters at manipulating their environment - they are not allowing him to do it, so he is really acting out.  It was an absolute nightmare getting him into this facility - I pray they will do what's necessary.  The laws in Florida are ridiculous.  When our son escalated to a very dangerous point we were told by DCF that if we did not pick him up from the hospital we would be charged with abandonment & if we did pick him up and he hurt one of the children, they would remove all children from the home and charge us with neglect because we knew he was a danger to the children.  What were we supposed to do?  They were forcing us to make a choice of which child - they would not help our mentally ill child. They offered us no solutions, no hope. There is no provision in the law for a child being a danger to the family.  There are MANY, MANY families in our same position.  The state handed us a broken child a refused to give us the tools we needed to fix him.

Because our son has Cystic Fibrosis - they told me he did not qualify for intensive mental health care.  He's not allowed to have both conditions-- okay but he does.  We fought and fought to get him into a SIPP program in Florida and could not.  We applied through our insurance and were denied based on they did not think he would be cured in 150 days (no kidding - he has a mental health condition - not a cold).  We contacted Senator Bill Nelson's office and he conducted a congressional inquiry -- the insurance did finally approve care - now to get a facility to take him.  Facility after facility denied him based on medical complexity.  It seems everyone agrees - you are not allowed to have both a mental and a physical condition.  In the meantime his condition was deteriorating quickly.  We did tell the hospital we could not bring him home until he received intensive mental health care. (we did this under the advise of DCF, his advocate and our lawyer).  They immediately called the sheriffs dept and he was taken out of our care.  It wasn't long after this I introduced my baby to his "temporary" foster mom.  Hardest thing I have ever done in my life.  This proved to be a terrible placement.  They placed my CF child in a smoking home -- it was another fight to get him out of there - with the help of his advocate - we did.  We also were finally notified that a facility in Arkansas had accepted him.  They seemed perfect.  They had a neuro - psychiatrist and would preform MRI's and such on my son to determine the cause of his mental health issues (as I said - it's not just the RAD).  We were in for yet another fight.  He was no longer in our care.  The state said he could not go because it cost too much money.  REALLY???  it was covered by my insurance - it would cost the state nothing -- didn't matter - the answer was no.  We finally convinced DCF, but not CPI - we had to go in front of the judge to get approval - thankfully the judge sided with us.

We are currently working a case plan to bring my son back to our dependency.  The whole thing has been horrible - to get my child mental health care we had to make him a dependant of the state.  Why?  Because there is no provision in the law for these children or their families.  Many families have terminated their rights completely because they simply do not know what to do.  There seriously needs to be reform. 

I am very thankful for our child's advocate through Disability Rights Florida.  She was instrumental in helping us acquire care.  She went into meetings with DCF and CPI that I was not allowed into (yes as they determine what is best for your child - you have no say) and was a voice that helped keep our family together.

We remain battling - there is a staffing every so often that we have to attend and all records are going to the state - I do not have the final say on my child - again very frustrating.  All I want is for my family to be together - but I want my son to NOT be a danger to the other children -- for this we are punished.
We will continue fighting for the rights of ALL my children - Pray that God grants us wisdom in a situation that makes no sense.

Struggling to dance....