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Commenting on Mental Illness

Stella has written a thoughtful & insightful post about a pervasive crisis within society here:

This is not progress – mental illness today in the USA

 

I wanted to share my comment on her post on my blog with my readers, so here it is:

First of all, sorry for the long post, I guess I got on a bit of a roll. So I’m leaving the below “as is” & hope that I haven’t crossed any lines or offended anyone. Most of this comment is based on first or second hand experience, for what it’s worth…

Years ago a psychologist did an assessment on me & said I was “severely depressed”. Some time later, at a doctor’s visit, I mentioned to the physician that I May be “severely depressed”, assuming the assessment was accurate. He offered immediately to prescribe anti-depressants for me. I declined & he actually said “good”. I told him my “depression” (assuming it’s “real”) was likely due in large part to having a severely disabled son, being overwhelmed with the care of four young children, financial stressors, & a lack of relational support systems. I said that I needed to learn how to live within the confines of the life God has given me & didn’t want some type of drug to mask the pain (treat just the symptom). Learning to live with grace in a less-than-perfect-reality (the only kind there is) is basically the essence of the human condition.

By the way, we’ve used psych meds on almost all of my ADHD family members at one time or another. There have been some benefits from the Ritalin style meds several of them used to take. However, 3 of the 4 family members with ADHD prefer Not to use meds to mediate their symptoms. All are gainfully employed & were reasonably successful students (though each hated school to some degree historically), though this condition still impacts their communication & relationships to varying degrees.

My much more complex son was/is a more difficult case. We were pressured to put him on “Ritalin” by the school system (ilegally)–while he was still in Special Ed Pre-School. I was extremely reluctant “to drug my kid up to get some peace of mind”. Several years after the initial pressure based on psych testing & input from a physician familiar with complex special needs kids, we put him on a trial of ADHD medicine–Welbutrin. That worked for him for about a year but he began to develop strange facial tics so we switched him to Strattera. He was on that for several years & it helped his attention, but after Welbutrin was removed (an anti-depressant) his behavioral/emotional control was markedly diminished (probably more of what he was like w/out psych meds but a Huge contrast to the relative “calm” on Welbutrin). Anyway that lead to the doc prescribing Paxil for his Autism cocktail of “depression, anxiety, & obsessive compulsive disorder”.

He functioned relatively well on Strattera & Paxil for years. However Neuropsychological Testing revealed significant attentional/processing issues that might be better addressed with an additional med, Metadate (a form of Ritalin). When the combo of S, P, & M was used for him he had some significant academic gains. He worked more slowly (took his time & thought things through a bit?) but his accuracy improved practically exponentially.

This was my son who needed a Liver Transplant, and as that surgery approached, we began to discuss his entire medication regimen from the standpoint of what would be best from his liver needs as well as what could appropriately address his other medical conditions with needed meds. Ultimately it was decided that Strattera would have to go as it was notoriously hard on the liver. Ironically once that med was removed he began having some of those facial tics again, though not as severely nor as noticeably as when he was younger.

I’d been “short dosing” his Paxil for years. He’d been prescribed 5mls & we’d usually use about 3mls. When he got used to the 3mls (& the doc adjusted her script to how much we were actually using, which was much less than the “therapeutic dose”) we continued to lower his typical dose to about 1.2mls. Even with that very small dose our whole family Really Noticed his behavioral issues when he’d forgotten to take Paxil.

Eventually after the Liver Transplant my son basically self-weaned off of Paxil all together. He still struggles with his emotional control & his anxiety & OCD issues have come a bit more to the forefront without Paxil. However, even when he’s in a place of diminished emotional control he still typically chooses not to “use” Paxil as an emotional crutch. We have supported him in his choices (he’s 22 & “his own guardian” who still needs much guidance & support) but remind him that that medication is available as a tool to assist him in managing his emotional needs, if he so chooses.

Also, since taking him off Strattera his communication has gone Way Up…Since the Liver Transplant it’s almost like he’s become a different person, much more interactive, more hyper verbally, sharing thoughts & feelings more freely, etc. This is likely due to more than just the med change but does make me wonder if the Strattera was rather slowing him down, not the way Metadate did to help him do more accurate work, but like putting him more in a stupor or a fog, for years. Given the complexities of his birth liver function & the buildup of toxins system-wide prior to transplant there’s really no way to know. I just wanted to mention it because the changes we observe(d) were likely due to multiple factors….

We are a Christian family, & this son, even more than all the rest of us “normal” family members, has an extremely vibrant relationship with the Lord. When he is facing intense emotional turmoil we encourage him to spend focused time with the Lord, reading Scripture, praying, & worshiping. This he does quite frequently. I remind him that one of the Fruits of the Spirit (according to Scripture) is Self-Control. Even though he is “wired” in his natural state to have less self-control, given the nature of most of his medical conditions, the Power of God is greater than his diagnoses & the Lord can help him come to a place of managing his emotional/behavioral challenges.

When he’s in an overblown state he’s often irrational in the heat of the moment, perhaps for a couple of minutes. However, we encourage him to step back (take a time out), use breathing techniques (& other skills gained via years of therapy, trial & error, or “professional input” from me–I’m a non-practicing Licensed Professional Counselor), engage the Lord directly, let us pray for/with him, etc. Anyway, usually these things work pretty quickly for him though due to “perseveration” (where he gets stuck in a mental or emotional groove) he may need A Lot of Processing Time, retreading the same ground over memories, hurts, confusion, & communication techniques & challenges…

This is all a Very Long Haul Process…

Years back I wondered if he would grab a weapon & do me bodily harm. As a grade schooler up through the junior high years he used to ball his fist & raise it over his head & his whole body/soul would shake as he wrestled with his extreme desire to punch me in the face. He never did such a punch. However he used to shove, hit, & claw at all family members but his dad (unless he was in an Extreme out of control rage) & appeared to deliberately enjoy inflicting physical &/or emotional harm when he was past the point of caring. He has come An Extremely Long Way since those more difficult days. He still seems to enjoy pushing other people’s buttons, just a little bit, & also throwing others under the bus…but then again, who doesn’t???! He still has his struggles & sometimes still “acts out” verbally or physically, but he de-escalates quickly & is usually truly sorry & repentant pretty quickly. I’d love to see the seas calmed before the storm hits, when the clouds are dark & heavy the the swells on the increase but apparently Jesus still sleeps in the boat well of my son’s soul until the storm has hit & his overwhelmed follower rouses Him so that even “the wind & the waves obey Him”…

Anyway, the bottom line is that I believe that mental/emotional illness is real & it is not automatically evidence of “demonic” oppression as many Believers have suggested over the generations. As a Christian I believe that God is the Creator of All Things, including mankind. As such it’s important to read the manual (Bible) in order to find out the best way for the human creation to function. Our personal experiences of living with complex mental/emotional “illnesses” have shown that the Power of God is able heal our wounded hearts & minds. He can enable us to “rise above” our “nature” & submit ourselves to His Lordship. Medication, Therapy, Supportive Relationships, Practice, & Consistent Reinforcement can all play a BIG ROLE in how well one might “overcome” or learn reasonably successful coping strategies to wrestle our own personal “demons”.

However, society at large, especially one steeped in secularism, political correctness, & lefty thinking is wholly inadequate to address the real and abiding needs of the mentally ill, chemically dependent, & certain types of severe disabilities. As such a modern rendition of some type of institutional system (NOT Prison) should be investigated, implemented, & evaluated and this is a need of crisis proportions. As this is a social problem it needs attention from society. Balancing the needs of the client/patient with those of society at large will possibly take a degree of wisdom not seen since Solomon. Having Federal Support/Oversight with Local Control seems like the most reasonable approach. Using faith-based systems in place might be a good starting place.

There probably will never be any type of complete solution to this problem. It seems akin to what Jesus said “the poor you will have with you always”…but it must also be tempered with another of the Lord’s sayings: “whatever you have done to the least of these, you have done unto Me!”. The final guidance should be “do unto others as you would have others do unto you” (or your parent/spouse/child/friend/co-worker)…

Just my 2 cents…for free!

May God Guide & Direct Us as we seek to address these glaring needs…

Commenting on a Transplant Tale

I’m still coming to grips with a sea of emotions in relation to my son’s Liver Transplant (among many other medical, educational, and interpersonal issues surrounding his life and my intense involvement in caring for his myriad needs) so it is always with a bit of trepidation that I approach other’s stories about the Transplant Journey.  This arena represents a potential emotional hand grenade for me personally & it’s never certain what might cause the pin’s removal leading to potentially devastating internal destruction.

The article below was impacting enough that I just felt compelled to write a comment afterwards, which I wanted to document here and share with my readers and also give myself a known repository of this particular topic in case I want to return to this article again…like for inspiration to gear up for when we finally contact the “Gift of Life” organ registry to attempt a contact with the donor family to express our deepest gratitude.

Such a contact has thus far remained beyond my personal ability to approach except in the most theoretical terms.  It’s hard to know where to begin in expressing the deep gratitude for the life-giving sacrificial gift this other family has provided.  We spent so much time while waiting for the Transplant in prayer for the family and the donor, asking that the Lord would be involved in all their lives, that they would each have a saving knowledge of Him, that there would be such wonderful memories made and no regrets for things left unsaid or undone with the donor.  Contemplating the eventual loss of such a loved one was almost more than I could bear.  What do you say when the Liver Transplant doctor says that your son’s “ideal candidate would be a 12 year old gun shot victim”.  I was more overwhelmed by  the other family’s impending loss than I was by our own upheaval as we awaited this amazing and generous Gift of Life.

Complicating such contemplations is the nature of my son’s complex medical status.  Some staff on the Transplant Team mentioned that in some locales they wouldn’t even offer a transplant to someone as complex as my son (the implication being that his autism or other atypicalities, not necessarily medical in nature, may have lead to a form of disability discrimination against him).  How will this other family feel when they discover that their child’s Liver Recipient is disabled in myriad ways?  What if God has yet to have answered some of the prayers noted above and this family is in a spiritual desert and cannot grasp the value of my son’s life because of his disabilities?  What if learning about who has received their child’s liver they are even more devastated by who/what he is and this adds immeasurably to their grief, pain, and loss?  Should I spearhead the effort to contact them and generate conversations periodically within our family, or at Liver Transplant Clinic Visits (we have another bi-annual one next week), to help prepare us, or should I wait for God to so move on my son, husband, or other family members?  Should I be the one to make the contact or should my son (who has various communication challenges but is incredibly gifted in spiritual insight and compassion) attempt this solo?

Just writing some of these lingering questions down reminds me that this is a process that needs to be bathed in prayer.  I need to reach some place of peace and serenity so that regardless of the donor family’s experience/reception we will feel “persuaded” in our ultimate approach in contacting them.

Any of you reading this that know the Lord please lift us up in prayer as we continue to process and prepare to eventually make contact via Gift of Life and express our Thanksgiving for this family’s Gift of Life to our son!  We don’t want to be among the 9 lepers who didn’t return to thank the Lord for the healing…

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image from bing.com image search original from blogspot.com

Please consider reading the original story of this group of Transplant Recipients meeting the mother of the Gift of Life donor…what testimonies!

Here is the link to the original article:

https://gma.yahoo.com/face-transplant-organ-recipients-meet-donors-mother-first-181313919.html

Face Transplant and Organ Recipients Meet Donor’s Mother for the First Time (ABC News)

Here are my comments left at the above article’s website:

This story is profoundly moving to me as the mother of a liver transplant recipient. My son was a teenager while going through the transplant process and as a strong Christian was prepared to possibly die if the surgery was unsuccessful. (Before his transplant operation he wanted to tell the surgical team “If I die during the surgery don’t be sad because I’m ready to go home and be with Jesus”–wow). As a young man on the Autism Spectrum he had a hard time understanding that for him to receive the needed whole liver a donor would have to die, so he initially thought he would be murdering someone to get their liver. We had to reassure him that it was ultimately God who would decide who lives and dies and it would all be in His hands…we were not causing the other family’s desperate scenario…

One way my son was comforted in being the recipient of the Gift of Life from someone whose life was cut short was that we agreed before his procedure that if he didn’t survive we would be sure to donate all of his usable organs and tissues so that others would also receive such life-sustaining gifts from him. In fact, while we were waiting for “his” liver we were contacted by the Liver Transplant Team to be prepared as a back-up recipient for another “perfect liver”, a seemingly unprecedented event. At that time another child was higher up on the Transplant List but was so ill that it was possible that they wouldn’t survive the procedure and my son who was to be “waiting on deck” would then get that other liver. This situation was just so unbearable for me personally, thinking that already one family was losing a child for my son to receive a liver was already overwhelming, and it would be incredibly devastating that TWO people would die so that my son would benefit. We called family together and beseeched the Lord in fervent prayer on behalf of this other child…and thankfully they (apparently) survived the surgery and were still doing well more than a year later when my son finally received his transplant. Being involved in a Transplant situation is deeply moving, challenging, and ultimately a lifelong journey of discovery.

Thank the Lord for those brave and generous families who choose to give the Gift of Life during their own season of heartbreaking loss and bereavement!

After checking back at the original article here is a reply to my comment that may have been written by someone who is professionally involved with transplants, and this is such an encouragement to me as it may be representative of other’s perspectives:

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  • these are the stories that make participating in an organ harvest so rewarding. One family’s loss can lead to so many benefits for other families, it is unfathomable. However, the pain, the heartache the loss is so palpable, during our surgical timeout the donor identified…the directed donations are identified as well as research donations. These are huge and incredible gifts

 

 

 

 

Commenting on “Caught in the Act of Bad Parenting”

“Now I’m a single mom who feels emotionally and financially tapped out raising a kid with a rare medical condition. Adding to the stress, my child has ADHD and ODD, which can’t be solved with a pill…”

This  quote is from the below posting (check it out)

https://lipstickandplaydates.wordpress.com/2016/09/11/caught-in-the-act-of-bad-parenting/

where a mom bares her heart.  It’s not easy to be this transparent with our struggles, so I really wanted to encourage her.  I’ve personally felt such tremendous isolation so many times in the process of trying to raise a special needs child and that’s while having an intact marriage and supportive husband backing and shoring me up along the way.  Either way I can’t imagine enduring such a challenging journey alone and how incredibly painful and overwhelming that  process likely is.

COMFORT IN SUFFERING? O yes! I hope you will share my joy over this precious scripture and make it one of your favorites too. I know it seems hard to feel like God gives comfort in suffering, but He promises to do so, and I have felt the comfort before, so I know He will give it again.:

The scripture image above comes from this site:

 

I hope (and pray) that the Lord is making Himself tangibly available to her and that she (& all of us bearing the burden of Special Needs Parenting) are experiencing that “Peace that passes understanding” and the “comfort in [our] suffering” that only the Lord provides.

Blessings to All,

Valerie

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Thanks for being so real here. May God give you Grace & Strength…and glimmers of Hope when you most need them. I don’t know if parents without special needs kids will ever really “get” what all of us in the (typically un-chosen by us but Chosen by God) club of Special Needs Parenting have learned, what pretty much goes without saying. There aren’t really enough words to come close to articulating the loss, despair, terror, anger, confusion, frustration, triumphs, hopes, dreams, persevereance, faith, and even Joy in the Midst of Sorrow that seem ubiquitous to our experience.

I have many times found comfort, encouragement, and inspiration in the writings and stories of other special needs families…here’s one place where I have personally found such special sustenance again & again…

http://specialneedsparenting.net/

Please Hang in There–You are NOT Alone! Blessinegs, Valerie Curren

I just realized the date you originally posted this, 9/11–the 15th Anniversary of that tragic turning point of a day. Not everyone outside of NYC has forgotten (some of us Never will!)…my special son in particular is very mindful of the tragedy of that brutal assault of a day. We continue to Remember, Reflect, and Revisit those events so that we can honor the memories of the lost, exalt (and hope to emulate) the heroism of the brave, and continue to pray for Comfort, Peace, and Closure (if that’s even possible) for the bitter, bereaved, and broken…in Christ, Valerie Curren

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The image above is from this site:

http://www.crosscards.com/cards/patriotic/9-11-memoriam/