Sunday, September 30, 2012

Thoughts from a Hurting Heart


I can't believe I have gone so long without blogging! This is just crazy! But sometimes life rolls that way. To me blogging is a way to express myself, share my heart and heal. On one hand, I have sorely missed sharing while on the other hand, I have not been in the best mental place in a while. But tonight my heart just HURTS and I need to share that with many people, so here I am. I wish I was in a happier place coming back here, but it does not seem to be in the cards.

Life is a journey. We don't always get to pick the direction of our journey. Life has a way of taking us down roads we NEVER thought we would travel, and yet the journey is ever continuing. I can even find the good in most of it, it just takes time and perspective.

As most of you know, the journey of this family's life includes this little thing called Spina Bifida. Spina Bifida.... such little words that I NEVER knew would make such a HUGE impact in my life. Until 12 and a half years ago I didn't even know those words. Today I could give a dissertation on them without thinking. And the crazy thing about Spina Bifida is that no two journeys are EVER the same, it works differently in every individual!

Another one of the journeys life has given this family is that of brokenness and abandonment. This is one of those things I don't talk about much, it is so personal and still hurts so bad, but it is part of what forms my little family. Fifteen years ago I married Mark, the father of my children. In my mind and my world marriage is a sacred vow and for life. In my world marriage is also a partnership where honesty, openness and teamwork are of utmost importance. Although Mark's words matched my thoughts and ideals, the reality he walked didn't. For years I prayed through a life of lies, deceit, selfishness, addiction, abuse and abandonment. For too many years I thought I could fix him through prayer and love, but when a person does not care to be Godly, whole or well there is nothing that anyone else can do to help that person. Mark walked a path of selfish destruction, that I was foolish enough to allow to touch me and my precious children. My marriage is now very much over and dead, but we still deal daily with the after effects of the learned behaviors that the children saw their father model (disrespect, violence, selfishness, entitlement, lying, stealing... the list goes on and on) and worst of all, the abandonment. Both of my children have HUGE issues over the abandonment.

One of the things about journeys is that sometimes you get blindsided when the roads that you thought were parallel suddenly cross, or worse yet merge! This happened to me this week and I am still reeling from it.

Spina Bifida manifests in SO MANY different ways. One of the ways that touches our life deeply is the cognitive end of it. Nathaniel deals with a lot of the Non Verbal Learning Disorder stuff: executive functioning, processing, sensory overload, lack of cause and effect thinking, fun stuff like that. The other Spina Bifida thing we deal with constantly is the chronic end of it: the constant pain, the roller coaster of medical needs, the endless surgeries and procedures. Now we meet this road up with the road of brokenness from our family stuff: the financial stress of a broken family, the juggling of all of Nathaniel's medical stuff with being a single mom, the trying to do a job created for two people and meet the varying needs of two children, the loneliness and emptiness of a broken marriage and the lack of a built in support system (you know, the end of a hard day when you just want to be held and instead you face more emptiness) and the never ending attempt to balance it all with good, fun and nourishing actives for the kids. I often feel like a pin ball stuck in an endless game, being hit from here to there, bouncing off of this into that, always on the move, never getting a second to rest and completely out of control of my journey.

Nathaniel has a lot of behavior issues, and what I call a HUGE sense of entitlement. We deal with rages, we deal with tantrums, we deal with a refusal so do the smallest task to assist the family, we deal with control struggles over the strangest things (like getting dressed everyday!) and we deal with trying to figure out how much he really does hurt vs. how much he is trying to get out of doing stuff (you say your back hurts too much to empty the bathroom trash can full of your catheters, but you are fine to be playing tennis against my garage door while telling me this???).  We have tried various types of behavior therapy for YEARS in regards to this stuff, and all of it has had limited effectiveness. I feel like his Regional Center service coordinator and I are CONSTANTLY trying to figure out how to best support Nathaniel while encouraging him to be the most that he can be. I feels like it is a minute by minute battle in my life to encourage him, and even at times force him, to be all that he has the ability to be, while he pushes back at me to just sit back and be served (not that I do that, but that is his demand). This week we had yet another "pow wow" style meeting over this.

Recently our service coordinator set up to have the Regional Center psychiatrist come out to our home and observe Nathaniel in his natural environment to try and shed some light on the situation and what we are missing. Now I want to be clear that this doctor is a man who we have been working with for some time now to try and coordinate services that actually benefit our family. He has read Nathaniel's file thoroughly, he has sat in on many meetings, he has a good background in this type of work, he has been insightful and helpful and I actually really respect him. The visit was nothing spectacular. Nathaniel was his normal self (obsessing on his broken foot, refusing to assist in simple household tasks, OCD and there was a mild tantrum when we pushed him to comply). We showed the doctor our home, our daily token economy, our picture charts to assist in sequencing, our feelings wall, you know, the normal stuff.  The visit was about 45 minutes and at the end he simply left saying goodbye and that he looked forward to discussing this. All in all not a huge deal to me. Yes, this doctor already knew Nathaniel pretty well, so there really wasn't any point in drawing this out too long.

As the weeks between the observation and the meeting passed, I really didn't think much of it all. We have had neuropsychology reports done before, he has had countless psych reports at school done. I thought I was sort of used to this, if anyone really can get used to this journey. I very honestly walked into the meeting a little off my game (fighting a cold) and totally thinking I would be getting  a dismissal. You know, the "Well we have done all we can, we just don't think there is any more to do." I have been getting those a lot recently and thought this was a set up for another one.

I could not have been MORE WRONG.

When we all sat down and the psychiatrist started talking I knew I didn't have this meeting pegged right at all. Some of the stuff he was saying I have said for years (lack of drive or self start, wanting things done for him instead of helping himself, withdrawal, controlling tendencies, etc.). Some of the stuff surprised me (that he thought Nathaniel was chronically depressed, that he felt the learned helplessness was debilitating, that he felt Nathaniel self sabotages himself, that he was SO dooms dayish). The tone and severity of the meeting really shocked me. I agreed with how he was describing Nathaniel, but I have never had anyone a) agree with me or b) think there is cause for concern. I KNOW that I struggle every minute with my son, but I am so used to being ignored about it that I was shocked. Totally shocked.

We came out of this meeting with some new labels:

Dysthymia: (also known as neurotic depression) is a mood disorder consisting of chronic depression. It is a serious state of chronic depression, which persists for at least 2 years; it is less acute and severe than major depressive disorder. As dysthymia is a chronic disorder, sufferers may experience symptoms for many years before it is diagnosed, if diagnosis occurs at all. As a result, they may believe that depression is a part of their character. Dysthymia has a number of typical characteristics: low drive, low self-esteem, and a low capacity for pleasure in everyday life. Mild degrees of dysthymia may result in people withdrawing from stress and avoiding opportunities for failure. In more severe cases of dysthymia people may even withdraw from daily activities. They will usually find little pleasure in usual activities and pastimes. Diagnosis of dysthymia can be difficult because of the subtle nature of the symptoms and patients often can hide them in social situations making it challenging for others to detect symptoms. Additionally, dysthymia often occurs at the same time as other psychological disorders, which adds a level of complexity in determining the presence of dysthymia, particularly because there is often an overlap in the symptoms of disorders. (Completely fits Nathaniel in my opinion).

Learned helplessness is a technical term that refers to the condition of a human or animal that has learned to behave helplessly, failing to respond even though there are opportunities for it to help itself by avoiding unpleasant circumstances or by gaining positive rewards. Learned helplessness theory is the view that clinical depression and related mental illnesses may result from a perceived absence of control over the outcome of a situation. (This is SO Nathaniel! And totally helps us see why regular behavior modification has had limited results with him!)

Reactive attachment disorder (RAD) is described in clinical literature as a severe and relatively uncommon disorder that can affect children. RAD is characterized by markedly disturbed and developmentally inappropriate ways of relating socially in most contexts. It can take the form of a persistent failure to initiate or respond to most social interactions in a developmentally appropriate way—known as the "inhibited" form—or can present itself as indiscriminate sociability, such as excessive familiarity with relative strangers—known as the "disinhibited form".  (From what was being said, this is primarily thought to be a result of the domestic violence that Nathaniel witnesses, and the abandonment of his father, boo hiss!!!)

While I can see why treating any and all of this could only help Nathaniel, I am disturbed by the lack of a path for treatment. There is just no flipping open the yellow pages and finding a doctor to treat all of this! It has been recommended that he will need a Medical Psychologist (someone who is used to working with cases of PTSD, chronic illness or amputees), and there really isn't a place for them to practice in this county! Then there is the fun factor that no one like to treat for the crap pay that state insurance pays. It is so hard to find good doctors that take Cen Cal or CCS here. We are so blessed to have Dr. Bravo and Dr. McGuire who are both GREAT, but they really are the needles in the hay stack when it comes to doctors and our insurance. But this momma will never give up hope! I will trust that the Lord has a path for us! I FIRMLY believe that we will find the help we need.

It has been recommended to us that we cast a net far and wide to find the perfect help for Nathaniel. And I have never been known as a box thinker, so that should be easy for me! I know that we live in an area with LOTS of retired folks. I also know that we live in an area where many people do not work in the fields that they specialize in (thank you wonky economy, and retirement packages that tempt people into other areas of work) so I am going to throw it out there. We are looking for someone with a background in medical psychology, someone who has experience treating any of the issues mentioned above OR PTSD, someone who can work with a child who's cognitive functioning is a bit low, and who is up for a very challenging case! The person or persons who are willing to take this on may not get huge money out of the deal, but they can get the satisfaction of knowing that they are helping to make life changing differences in a young man's life and in our family's life. I KNOW that the Lord has a perfect plan, I am just anxious for Him to show it to us!

All of this has been so overwhelming to me. Life in general is heavy around here, this sort of threw me over the edge. I have come to a place where being  single mom is wearing on me, school has been a tough adjustment for both kids this year, I miss Bri and things with Mark just keep getting worse. I am thankful for the friends that I have who allow me to fall apart and they still love on me. I am thankful for people like Bea who just is there and is ok with me saying I can't talk yet, but she stays there. I am thankful for people like Terry who know that sometimes a great hug speaks louder than any words. Or for all of my SB mommy friends who I can say "please pray" to and they just do it. I know there are more, but I am so tired from writing I can't think of them! I don't know how I could be on this journey without all of the people in my life. In my darkest hours there is always someone there to encourage me to take the next breath, or step.

I am not without hope. I KNOW that God has a special plan for my dear Nathaniel. But I am reeling with all of this new information, and the unknown road ahead of us with it. Please forgive me if I seem off of my game, for I really am! If you are a praying person, please keep us in your prayers. If you are a hugging person, please wrap me up in one. If you are a friend, thank you!

Thank you for reading the novel of my heart today!