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Be Careful What You Ask For!

Someone at another site asked me how I was doing…here’s what I shared:

“I’m sorry you are carrying such a heavy load.

I’m relatively OK.  I’m seemingly “stuck” in some type of quasi-PTSD hopelessness loop over not being able to get any positive traction on my son Josiah’s Special Education case.  I’m still furious about how they broke the law with impunity & how the legal protections for the vulnerable are twisted into butt-coverage for the bureaucrats…it makes one feel so helpless/hopeless.  I did Major work for like a year & a half on Josiah’s Special Education case & when we finally talked with an attorney (after some funding from a family member made such a conversation possible) he basically said “there’s nothing you can do for your son…but I’d really like you to go ahead & be an advocate for other kids”.

I’m not fully ready to concede defeat but am still so burdened by the pain & frustration of it all that it is Very Hard to move forward mentally or emotionally.

My husband wants me to speak with a Counselor but I am skeptical that there is really anyone out there (besides God) who can grasp the magnitude of what we’ve faced historically with our son, it’s ramifications in our lives & for me personally, & I can’t even muster the energy to attempt to contemplate having such (allegedly) therapeutic conversations.

I’m not (obviously) actually very good at “letting things go” & really need the Serenity Prayer conceptually to help with this process.  I hate to “give up” but I also hate to see the “system” escape unscathed & have Zero Accountability.  It’s also still too bitter & unapproachable to try to advocate for other people’s kids (even if I could muster the energy or find the appropriate avenue to do so) when there is still so much that needs attention in my own son’s life.

These are like those “first world problems” that lefties mock people for.  Not the basics of food, clothing, or shelter but more the apex of that Maslow’s Hierarchy of Needs Pyramids proverbial “Self-Actualization” BS arena, I think.

Sometimes I think I’m just too scarred from all the battles to even begin to know how to live in “regular” society.  I’m in pseudo-hibernation/cocooning in hope that (eventually) winter will end (my fat stores will melt off!) & I’ll emerge a beautiful butterfly with sufficient energy to pump those superfluous abdominal fluids into those nascent but hopefully beautifully majestic wings & somehow manage to soar above before my brief sojourn planet-side is over!

OK, so it’s very late & I’m expressing my self in verbose flights of fancy…Thanks for asking how I am…I hope you don’t mind my ridiculous reply!

If I may quote you here “I am an emotional basketcase and the pain is brutal and that’s the upside of my grief right now.”  I really do relate…”

Our conversation can be found here:

Prayer Requests – 9

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from a Bing.com image search for “butterfly scripture”

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Change–Blast From the Past

This song just keeps popping in my head…check out the YouTube site for detailed info on the song & musicians if you’re interested here: https://www.youtube.com/watch?v=QJMUugMQeIg&list=PL8Z7cWD-PWoDhiXoOJx3ypcSSW90YLyNO&index=7  

I couldn’t even remember the artists who did this song so looked up some of the lyrics online to find it was done by “The Archers“, a Christian group from “back in the day”.  I found this album, Fresh Surrender, at another family’s house, I was there babysitting their kids, & used to play it sometimes on their record player after the kids went to bed.  At that time I remember thinking that those parents were pretty cool to have some (seemingly) Christian Rock Music choices in their home.

This family has stayed pretty closely connected to my family over the years.  The parents & my parents have been part of a local “Prayer Group” of Christian couples that has been meeting regularly since the 1970s.  Several members of this Prayer Group have since gone on to their reward & the Prayer Warriors are now more likely to meet separately as a Men’s Group & a Women’s Group than their former Couples-focused Prayer Group.

Many of these Prayer Group Prayer Warriors have been an integral part of Prayer Support for my family over the years.  Jon & Judy, whose kids I was babysitting, were also heavily involved in praying for my son, Josiah, & our family during his Liver Transplant process over the years…What a Blessing!

It’s funny how a song from decades past can pop into your head & grab hold of you.  Here are the lyrics, from another site: http://greatgreatjoy.com/2014/11/19/change/

Change
Don’t come easy sometimes
I’m a stubborn girl
I just want to be alone
Sometimes

Maybe You’ve been showin’ me
Just how nowhere
My own will has been
As far as You’re concerned
And You really love me

Lord I need Your love, I need Your care

And I welcome Your change
Like I welcome the rain
After nothing’s grown in a long, long time

Sometimes
Any change is better
Than staying where you are
When you’ve been there too long
Already

All the changes you’ve been bringin’
Only seem to heal me deep inside
And I don’t wanna be alone
Without You

Lord I need Your love, I need Your care
I find my rest in knowing that You’re there

And I welcome Your change
Like I welcome the rain
After nothing’s grown in a long, long time

Ah, ah ah ah, ah ah ah

And I welcome Your change
Like I welcome the rain after a long, long time
Been a long, long time

La la la la
La la la la
La la la la
La la la

I’m so thankful for the ongoing fellowship of faith that is available to all of us.  The Lord is permeating the world around us & is calling to us always, if only we have eyes to see & ears to hear, we can connect on a deeply personal level with the Eternal God.  In encountering this song again the line “Only seem to heal me deep inside” is the one bringing those misty eyes.  I’m so thankful for the tender loving touch of the Master’s Hand!  Thank you, Lord, for showing forth Your Love & Grace to me, to us all, always.

Blessings,

Valerie

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from a Bing.com image search for Bible healing

If you are interested in learning about our experiences with Josiah’s Liver Transplant, I’ve “encapsulated” some of that journey here:

https://specialconnections.wordpress.com/2017/07/30/four-years-ago-today-a-transplant-tale/

I’ve also archived our journey (including messages, like those from Jon & Judy mentioned above), as recorded in my CarePages blog, JournalingForTheJazzman here:

https://jazzmanjournal.wordpress.com/about/

I’m still developing the JazzmanJournal site so it’s easiest to navigate from the About page currently, or to do a search.

If you might be interested in following along further on the journey with Josiah here is where I’m continuing to blog about his medical situation & prayer requests & happenings with him & the family, since CarePages is ending.  God Bless YOU!

https://www.caringbridge.org/visit/josiahcurren

Feelings

This a beautiful post that seems to encapsulate some aspects of the autism experience from within. I’m so thankful that some people will choose to open up & share their unique insights from their personal perspective. I hope to get my autistic son to read the original post some time & see if he actually relates to this description of emotional/sensory overload.

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from a Bing.com image search for “feelings scripture”

Here’s what I shared with the author:

valeriecurren
Beautifully & eloquently stated. This helps me understand my autistic son just a little bit better. Thank you for sharing this!

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from a Bing.com image search for “feelings scripture”

Image result for feelings scripture

from a Bing.com image search for “feelings scripture”

Please read the original post, I will revisit it too, which is why it’s posted to my blog, for it is precious & in her own words!  Blessings, Valerie

autismthoughts

I think I feel too much. That is what autism is most like for me. Autism is feeling everything acutely all the time. I literally feel everything. I feel every object in a room. I feel sounds and smells and tastes. I feel words. I feel emotions. I can’t say I feel differently than you because I don’t know exactly how you feel. I have never been you. But I can say that I feel everything physically. And it is exhausting…

I was telling a friend today that I think I love too much. Love for me is overwhelming. It makes my whole body tingle. Love is a burst of energy that penetrates every fiber of my being. It feels like it literally changes my DNA so that I am now connected to a person in a way that they are made a part of me. I love hugs because it…

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Celebrating the Life of The Legal Genealogist’s Nephew Tim

from the posting below “That’s Tim there in this family photo from a reunion in 2002. The one on the left, in the wheelchair.”

http://www.legalgenealogist.com/2017/06/24/saying-goodbye-2/

I was just moved to tears by this family’s loss and the beautiful tribute this Aunt wrote about her nephew Tim.  She shared some of the things that made Tim unique & special…and none of them was about Special Needs!  May we all be remembered thusly by those we eventually leave behind, clinging to treasured memories & love…

Please lift up this family in prayer as they lay Tim to rest…may they all find comfort.

Blessings,

Valerie

Please visit the original post above to read about Tim as his Aunt has shared some of his legacy with us all…“We saw the shining spirit that was Tim.”

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from a bing.com image search for “sorrow not as those who have no hope”

Image result for sorrow not as those who have no hope

from a bing.com image search for “sorrow not as those who have no hope”

I shared this with The Legal Genealogist:

Your comment is awaiting moderation.

Thank you so much for sharing this tribute to your nephew. So sorry for your loss, but what a beautiful way to honor who he was. I have a special needs son who sometimes is only seen as Autistic…but, as you’ve so lovingly shown about Tim, is so much more than a label…or a chair.

May the Lord bless you and your extended family as you celebrate Tim’s life, mourn his loss, and share his legacy.

Blessings, Valerie Curren

PS I shared your post with my readers here:
https://specialconnections.wordpress.com/2017/06/25/celebrating-the-life-of-the-legal-genealogists-nephew-tim/

Sharing from 2015, Prayers For Conner

Source: Prayers For Conner

This is an older post but tells of some of the details of a young family experiencing their baby’s heart surgery.  The minutia are different from our experience, yet in many ways the story is the same.  I’m so thankful that other writers share from their hearts their experiences and their perspective.  This “Prayers” posting was written by Conner’s grandmother–and what a loving, godly heart she exhibits…

ConnerJune20174

 

“Added note. To all who were here with us when my grandson Conner had his heart surgery almost two years ago now, who have asked so frequently how he’s doing, I added his picture. Yep, he’s one of the next generation of fearless daredevil boys in the family. His favorite thing is climbing and jumping, which he’s in the process of doing here. Thank you all for remembering him.” 

This update on Connor, and his picture, is from his Grandma’s recent posting (that is also well worth the read) here:

Thank You God, For Men. Real Men.

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Image is from a Bing.com image search for “heal your heart scripture”

It is a blessing to me, and hopefully to you as well, to be reminded of the Lord’s faithfulness in delivering other people out of their challenging circumstances.  I know nothing of this family beyond the two posts referenced here…but I know the Joy of seeing a heart surgery child running, climbing, and in general just being a boy!!!

Blessings,

Valerie

 

Image result for heal your heart scripture

Image is from a Bing.com image search for “heal your heart scripture”

Update June 23, 2017

Please check this post at my son’s new blog for further info about Conner & his family in the Comments Section.  Thanks!

https://josiahsfreakshow.wordpress.com/2017/06/21/josiahs-first-post/

Here are those comments from Josiah’s site, as of 11-1-18…

20 thoughts on “Josiah’s First Post”

  1. Menagerie

    I’m looking forward to hearing more of your story Josiah. My four year old grandson has recently been diagnosed as autistic. He has been in speech therapy for several years and also has occupational and physical therapy. Next year he will attend pre school at a school for special needs children.

    Great job on your first post. Blogging can be a very rewarding outlet, and for some who work very hard at it, even an occupation.

    I wish you great success in your endeavors.

    Liked by you and 2 other people

    1. The Autism diagnosis can lead to quite a wild ride. We are quite familiar with the Therapies, Speech, PT, & OT, ones he still should be receiving. Josiah used to also receive a form of OT called “Sensory Integration Therapy” that helped with many of his sensory issues.

      Depending on the severity of your grandson’s needs there are quite intensive therapies (like ABA–Applied Behavioral Analysis) available that are theoretically Required to be provided by Special Education. I believe the Pre-School portion of IDEA (Individuals with Disabilities Education Act) is called “Part C”. If your family hasn’t yet geared up for special needs advocacy I would strongly encourage you to arm yourselves for “battle” here. Of course my perspective is colored by years of illegal abuses of special ed law from our local school system…

      Here is a source of helpful advocacy info, a jumping off point, depending on how deep you want to engage the rabbit hole here:

      http://wrightslaw.com/

      http://www.wrightslaw.com/info/autism.index.htm

      http://www.wrightslaw.com/info/ei.index.htm

      Supports & Services vary widely by state. Where we live in Michigan there is an organization called Community Mental Health…Josiah used to receive the above therapies through them because of Developmental Disabilities (and still could if we could work out insurance issues). They also were involved in The Early On Program (then birth to age 5) and still provide Case Management services and Respite Care for our Family.

      It’s really important to get good/great information about Autism (from my perspective) and EARLY INTERVENTION IS CRUCIAL. We didn’t get Josiah’s Autism diagnosis early and dealt with a school system in complete denial of his spectrum issues so we have a lot of baggage in this arena. Anyway, having Great Professionals on board is vital, like Behavioral Pediatricians.

      Here’s some general overview of some necessary autism-related disciplines:
      Behavioralist/Behavioral Pediatrician
      Autism Waiver Program Center
      Neuro-Psychologist (Neuro-Psych Testing is Crucial too–way beyond scope of school testing)
      Communication Disorders Center (we never went due to funding/insurance probs)
      Specialty Learning Centers (ditto above note)
      Respite Care, in home & center based
      Therapies (PT, OT, Speech, Sensory Integration, Music, Art, Group, etc)
      Sensory Diet
      Social Work
      Counseling
      Psychology
      Medication Management
      Dietary issues (we never went this route, but some people swear by it)
      Tutoring
      Sib-Shops (a siblings of special needs program, normalizes experiences for families)

      We are blessed to have a local physician who is a strong Christian and has her entire practice dedicated to managing complex special needs children & their families. They try to provide a “Medical Home” there and are quite involved in medical, therapeutic, educational, & social interventions…perhaps there’s someone similar in your/their area?

      Well there is A Lot of info out there. It’s probably best to get connected to people going through similar experiences relatively close to home (something I never did). It’s also key to get some degree of Prayer Covering depending on what battles/issues you might face.

      May the Lord equip, encourage, empower, and establish you and your extended family as you enter into the fray in a completely different way. Autism is a universe unto itself, each child being incredibly unique and yet “fearfully & wonderfully made”. Enjoy the Journey…You are all Blessed Beyond Measure and now members of the exclusive & exhausting club of Families Impacted by Autism…

      May the Lord give Grace, Peace, & Joy to you and yours,

      Valerie

      I could give you the actual names & disciplines of people involved in Josiah’s Autism care (in MIchigan and often affiliated with the University of Michigan Hospital) so that your family could get referrals from their departments to high caliber people in your area, if you’d like. Please email me directly at
      ValerieCurren@sbcglobal.net
      if you’d like that type of detailed info.

      Liked by you and 1 other person

  2. Menagerie

    Conner is fine and healthy now, and he runs us ragged trying to keep up with him. Although it was a very scary experience for our family, and it is never a minor thing to have open heart surgery, we were.very fortunate that Conner’s problem was one that was easily repaired in one surgery. He had holes in the upper and lower chambers of his heart. One would have grown closed by itself eventually, but the other was too large, and the holes from one side to the other didn’t line up, so they had to do surgery.

    The doctors said Conner is now fine, and should have no further problems with his heart. He goes to see a cardiologist once a year to get checked out.

    Thanks for asking about him. There is a picture of him on the post your mother shared on her blog.

    Liked by you and 2 other people

    1. Sounds like Conner had a VSD (Ventricular Septal Defect) & an ASD (Atrial Septal Defect)…like Josiah did, among other things…right? Josiah’s first heart surgery at 2 months & 4 pounds was that VSD repair with a Gortex patch. Later when Josiah was 4 1/2 he had another open heart surgery with a “Sub-Aortic Stenosis Resection with Myomectomy”–basically they removed a hardening of the tissue and a small amount of heart muscle just below his malformed aortic valve. He has a Tri-Cuspid rather than the normal Bi-Cuspid Aortic Valve.

      His Aortic Valve is still being monitored as well as the Aortic Root/Arch which is somewhat dilated so will likely involve another Open Heart Surgery…eventually.

      Will Conner also have to be monitored by Pediatric Cardiology for the remainder of his life? If so, how frequent are the visits? Josiah’s never been less frequent than every 2 years…and when things were fairly dicey we were seeing Peds Cardiology every 3 months…

      Thanks for reading Josiah’s blog & communicating with him! This means so much to both of us!

      Blessings,

      Valerie, Josiah’s mom

      Liked by you and 3 other people

      1. Menagerie

        Conner sees the cardiologist once a year, in Chattanooga. The Vanderbilt doctors said there was no need for him to come back there unless something very unexpected happens. If I remember correctly, they are going to see Conner yearly at least until he is school age, and they may change that then.

        Liked by you and 2 other people

        1. Well hopefully things continue to improve in the Heart arena for your family. Since we were told Josiah would Always be followed by a Pediatric Cardiologist I guess I assumed that was a typical Heart Baby scenario. Maybe that depends on the nature of the Congenital Defects…some repairs are lifelong. Great that they can see doctors (presumably) closer to home…One of the reasons we moved to Metro Detroit from Northern Michigan was to be nearer to Josiah’s Specialty Care at U of M…

          Liked by 2 people

  3. Pingback: Sharing from 2015, Prayers For Conner | Special Connections
  4. Hi Josiah! I am a friend of Menagerie’s who also blogs at the Tree House. I grew up with a younger brother who was diagnosed with autism way back in 1956. Boy….things were a lot different back in those days as far as diagnosis and treatment. I am just amazed and delighted to hear about all the opportunities that are being offered today.

    I look forward to reading more and learning more about you.😀 (Yeah…I’m one of those people that like to use the happy faces.)

    Liked by you and 1 other person

      1. Hi Valerie! The happy faces are easy-peasy.
        1. Go to the Dashboard on your WordPress Administration page.
        2. Scroll down to “Settings”….it’s the second option from the bottom.
        3. Select “Settings”, then click on the second item, “Writing”.
        5. On the top of the page you’ll see “Formatting”…..click on the first box that says, “Convert emoticons like 🙂and 😛 to graphics on display.” This will allow you and your readers to type in the semicolon, dash, and right parenthesis that makes up the basic smilie.

        As for my perspectives on Autism, I don’t know how much I can contribute that would be of use. I’m thinking what I do have to say would probably be more appropriately said on your main blog. I’ll pop over in the morning.

        Liked by you and 1 other person

        1. I never did find “formatting” under item 4/5 from your instructions…so didn’t quite get to the emoticons option. Perhaps they’re not available when one is only using the “free” wordpress service? I do appreciate the suggestions here though…

          Liked by 1 person

  5. Hi Josiah! I’m a friend of Ad rem and Menagerie. Will be interesting to follow your blog. I have two grandsons – one in high school and another in middle school in Illinois. I live in Michigan too.

    My older grandson had a malformation of the skull when he was a baby, but it fortunately didn’t require any intervention other than braces on his teeth a couple of years ago. Somehow, everything worked itself out as he grew.

    What is your favorite thing to do?

    Liked by you and 1 other person

    1. Hi Stella, this is Josiah’s mom, Valerie. Josiah has a Great-Aunt, my dad’s sister, in Illinois. She lives in the Chicago area, Naperville and usually comes to Michigan to see our family at my parents’ Cottage in Gaylord. We hope to see Aunt Pat near the 4th of July…hopefully she’ll get to watch the annual fireworks over Otsego Lake with us but we’ll see since this trip she’s staying with her late husband’s family a few miles from the Cottage.

      Liked by 2 people

      1. My family lives in Oak Park, IL. My daughter and SIL both grew up in the Detroit area, and I lived in Illinois myself for about ten years (my daughter was born there).

        We normally spend July 4 at St. Helen, not too far from you, at my SIL’s family’s cottage, although I won’t be there this year. My older GS’s birthday is July 3, and we always have his birthday party in St. Helen, but he is in Japan on an exchange program for six weeks.

        Liked by you and 1 other person

        1. Blessings on you & yours as you celebrate Independence Day perhaps further afield. I was out of the county for the 4th in the late ’80s on a Missions Trip in Liberia, West Africa and it was extremely strange to not be in America with celebrating Americans for that patriotic holiday. It does make you realize how we blessed we are in this country though…

          Liked by 2 people

Parenting Blogger Emily Austin on Turning a Hobby into a Full-Time Job — Discover

Emily Austin on the evolution of her parenting blog, The Waiting, and her growth as a blogger.

via Parenting Blogger Emily Austin on Turning a Hobby into a Full-Time Job — Discover

I’m no where near ready to take most of this advice, but it’s definitely food for thought!

Bikers Rock Mid-Michigan for Jesus!

We were so privileged yesterday to participate in the Blessing of the Bikers event held this year at Victory Biker Church in Lennon, Michigan!  My husband’s band, Lively Pelts, was among several Christian Rock Bands invited to share in this amazing venture.  Also attending were Second Day Story, The Savior’s Army (TSA), and the church’s house band, Anchored in Christ.  That church band can sure rock!  The lead guitarist/singer, “Crow”, is also the church’s worship leader–wow.

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Lively Pelts, Marty–Lead Guitar & Vocals, Roy–Drums, & Michael–Bass & Vocals: 6-17-17

 

This day also featured a special guest preacher, The Machine Gun Preacher.  This is the real man upon which the movie by that same name is based–he actually said that there is a movie sequel in production that should be out in a year or so.  Machine Gun Preacher shared some of the moving stories based on his intensive involvement in all types of ministries in Africa, where he lives and works full time.  He appears to be doing serious kingdom work over there and his ministry is well worth investing in.

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Machine Gun Preacher at Blessing of the Bikers, Victory Biker Church, 6-17-17

Check out his website here:  http://www.MachineGunPreacher.org/

Victory Biker Church seems like quite a unique place for real world fellowship and teaching.  They obviously cater to bikers but were very warm and welcoming to us band families too.  There were people of all ages and races present and they really exhibited a Family of God atmosphere and a come as you are mindset.  This seems to be a church where The Rubber Meets The Road–Literally!  Please feel free to stop by and visit them if you are ever in the region of Flint, Michigan on a Sunday–you are sure to be blessed!

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Poster for Blessing of the Bikers, from VictoryBibleChurch.org

Following the concerts the Bikers were going on a Hundred Mile ride, fanning out across Michigan to share their faith in Christ along the road.  This was a day for real ministry to the real world by real people, many of whom have a background of brokenness, but have surrendered their hurts, habits, hangups, and history to the Lordship of Jesus Christ and He is using them mightily!  How many of us can truly say that about our own walks with the Lord if we are being completely honest?

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Poster for Machine Gun Preacher, from VictoryBikerChurch.org

There were quite a few trials the band faced in participating in this event from power outages, technical difficulties, & even near collapse from heat exhaustion.  In fact, when “Crow” took the stage just after the Pelts set, he declared “It’s hotter than hell-fire up here!”  That was no exaggeration…so the guys really had to press through on multiple fronts.  However, this was a venue and event that bore tangible fruit in the Kingdom of God, & we were so blessed to be there & to be part of at least Four New Souls coming into the Kingdom by accepting Jesus Christ as their personal Lord & Savior!  Thank you, Lord, that your Love is not limited to one type of person but is poured out freely to us all!!!

Blessings,

Valerie

A version of this quote below adorned the men’s room wall at the Biker Church and my husband enjoyed reading the quote aloud to various family members Sunday.  In honor of Father’s Day, and manliness, this perspective seems extremely apropos!

Image result for what a ride quote

from a Bing.com image search for “what a ride quote”

PS  please check out Michael’s band’s Reverb Nation page…or find them on Facebook…