UNC….University of No Change

Nine months is a long period of time.  A human egg can be fertilized, cells begin to divide, and a new life if created in the span of 40 weeks.  Seasons can go from a beautiful fall day to the dog days of summer in the span of 270 days.  Lastly, absolutely nothing can be accomplished in the span of 9 months.  My husband and I have just found out how little can be done in 9 months all under the guise of "psychiatric care".

Last November, Paige began her journey with her first psychiatrist.  We were thankful that Paige had been accepted into an out patient program at one of the most prominent teaching universities in the US.  Our hopes  for her improvement were high.  We put our faith, our daughter's mental health, and our trust in a program and its professionals.  In exchange for our faith, and insurance coverage, Paige would begin working with a psychiatrist, an educational specialist, and an LSW whom acted as our liaison between Paige and the university professionals.

Paige went through an 8 week, intensive screening process.  When we sat down in the LSW's office, for the results of the screening process, I remember weeping because I thought: "This is it, we may finally get some answers".  My tears soon turned to confusion.  The doctor's report seemed so far off base.  Was the doctor seeing the same child we live with every day.  For Paige's sake, we took the information in and let the therapy proceed as suggested.

Weeks turned to months and we did not see any positive change in Paige's behavior.  In fact Paige seemed to be deteriorating with every passing week.  I made countless phone calls weekly, even daily, to the LSW, hoping to get answers on Paige's behavior.  Week after week the answers were the same:  "Ah ha, I see", "Paige is going to  require long term care".    Little did I know that the university did not intend to be part of Paige's care plan.  Two months into Paige's treatment Paige's  doctors were formulating her discharge date.  Paige was going to be out  of the program in July.

When Paige's discharge plan were made we were never informed.  We had always been told that Paige would transition out of the program but we were never given a date.  In the early summer Paige's behavior deteriorated in an alarming state.  When we needed help the most the university did little to assist our family.  One afternoon I got the call,  Paige was "OUT OF THE PROGRAM" in July!  No warning, no notice, Paige was out.  We were hung out to dry.

Earlier this week I went to pick up Paige's record's from the university.  I tried to speak with the LSW liaison but I was told that she was with the "new doctors".    All at once I realized why Paige was released from the program, it was a new school year.  A new crop of doctors was rotating through the "clinic".  Paige's psychiatrist had done her time in the university and had moved on.  Paige was a victim of the revolving door doctor program.

So here we are 9 months later.  Paige was no more than a guinea pig the the university system.  My complaints to university administrators have fallen on deaf ears.  No one wants to own up to duping our family.  I wonder how many other children now find themselves in the same position.  How many our families are voiceless in the world of pediatric mental health.

Despite our wasted time, hope, and money, God has been faithful.  We have found a wonderful new therapist who has a great deal of experience working with children like Paige.  After my first meeting with Paige’s new doctor I have a sense of renewed hope.  I feel as if there is someone in our corner fighting this difficult battle with us.  Paige may finally have her chance for a more normal life.

What Happens When…..?

I have always thought that one of my main roles as a mother was to protect my child from pain, harm, sickness, and the day to day life struggles that make our lives difficult.  Recently, I have had to acknowledge that I can not protect my daughter from the one thing that is causing her constant turmoil.  I am helpless in this battle to protect my baby.  How can I fight her mental illness?

Over the past two months my 6 year old's daughter's behavior has spiraled out of control.  Paige has always had difficulties in her life, nothing has ever come easy for her.  Abused and and neglected by her biological family, we her foster family, were left to pick up the pieces of her broken life.  By the time she was 3, Paige had lived a life time of sorrow and torment.  I hoped and prayed that soon she would recover; the next month or year would be better for her, it had to be.

As time passed, “better” never seemed to come.  Birthdays came and went, each year was more difficult than the next.  Bad behavior gave way to truly concerning behavior and I find myself here today; exhausted, angry, overwhelmed, sick and tired of doctors who can't agree and doctors who want to jump ship when we need them most.  I have done everything that has been asked of me by MD's, psychiatrists, and social workers,  and nothing has changed for the better. 

Why is it that the professionals do so little and get paid so much?  Paige has paid the ultimate price for the ineptitude of "the system".  By the Paige was 4 months old she was placed into the foster care system, her needs were never the priority.  This country’s foster care system is over burdened and under staffed.  Too many children languish in “the system” without a voice or advocate. 

It is often hard not to focus on Paige’s start in life.  I try not to think about the "what ifs".  What if we had been able to adopt Paige a year sooner, what if she did not have to visit her abusers, every week, for 1 1/2 years?  What if she had been loved since the day she was born?  What if I could have done more?  If it weren’t for God’s grace and mercy I think I would be over come with these thoughts.  I know that God wanted my husband and I to be Paige’s parents, however He never promised us an easy journey.

Prior to writing this post this I was “moved” to look for a Christian therapist.  Within an hour I received a call from the therapist I had e-mailed.  After spending 20 minutes discussing Paige  I felt confident to schedule an appointment.  It may be too early to be hopeful but I feel some what better.   Now all I need to do is give my burden over to God, only He can shoulder the burden that has been so heavy on my heart.

When is Never?

I have been reading parenting books on childhood behaviors, ADHD, SPD, and other disorders for the past 2 1/2 years.  We have been given advice on parenthood from friends, family, doctors, and perfect strangers.  Until today, no one and no "how to guide" has offered my husband and I words that have had a substantial impact on our family situation.

Today, I took Paige for her initial intake evaluation for "Intensive Home Therapy".  We have reached a point in our lives where once a week, out patient psychiatric therapy, is not effective for Paige's escalating behaviors.  I immediately liked Paige's future therapist, Miss D.  If we are accepted into this much needed program, Miss D. promised me something we have not had much of in Paige's treatment thus far.  Today, I was promised honesty and a forthright professional exchange on what we are facing with our daughter.

Driving home from the appointment I went over the conversation I had with Miss D.  I was somewhat irritated because I had not heard many of these statements from Paige's treating psychiatrist.  I felt as if the bulk of what has been discussed in the past 6 months of therapy has been sugar-coated to save my feelings.  The harsh realities of a 5 year old with mental illness are just that, HARSH.  Obscuring our reality or that of our future will only cause our family more pain "down the road".

Despite the reality check I got this afternoon, our morning got off to a great start.  Paige "graduated" from pre-school.  I know that many people that feel that graduation for young children is a foolish exercise.  On some levels I agree, we reward our children for almost anything these days.  But today, I am just a proud mom of a little girl.  Today may be the first and last day Paige is on equal footing with her peers.  Today, Paige was just a little girl wearing a white cap and gown.

As I think about the months to come I know that many things will change.  We will have therapists, in our home, 3-4 times a week.  When September rolls around Paige will not be starting kindergarten with the children she graduated with; Paige will go into a special education class.  My hopes for homeschooling Paige are now memories of what I had hoped for; instead she will be taught by another woman.

It is my greatest hope and my constant prayer that Paige will reach a point where her conditions stop worsening.  Often, I used to say to myself, "next year will be different".  Each year is different but not in the ways that I had hoped.  For now I want Paige's internal turmoil to become still.  I want her to do the things an average 5 year old does.  I pray for a time with less therapy and medication.  I want the peace we once had in our home to return.

I am faithful that God knows what is best for Paige and for our family.  It would be so much better if I turned more to Him than to the doctors I seem to talk to daily.  God brought Paige into our world and it is our joy, our pain, and our responsibility to see that she gets the care she needs.  God in turn will take care of our needs as we lay them at His feet.

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