Sharing from 2015, Prayers For Conner

Jun22

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.

Image result for heal your heart scripture

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”

  3. 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

    REPLY

    2. 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

      REPLY
  4. 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

    REPLY

    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

      REPLY
      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

        REPLY

        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

          REPLY
  6. Pingback: Sharing from 2015, Prayers For Conner | Special Connections

  7. 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

    REPLY

      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

        REPLY

        2. 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

          REPLY

  8. 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

    REPLY

    2. 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

      REPLY

      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

        REPLY

        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

          REPLY

26 thoughts on “Sharing from 2015, Prayers For Conner”

  1. I also shared with the original author, Conner’s grandmother, this comment on her “Real Men” posting:

    Thank you for sharing about Conner & the challenges your family faced during the medical crisis related to his early heart surgery. Do you write more about these medical issues, or does another family member, for I’d love to read more?

    FYI, I shared a link to this posting and your 2015 post about prayers for Conner on my blog. Please feel free to check out some of my writings about our family’s journey in special needs, including heart surgery.

    https://specialconnections.wordpress.com/2017/06/22/sharing-from-2015-prayers-for-conner/

    Blessings to you and your extended family. What a privilege it is to face those extremely trying challenges in life alongside of a strong & godly man!
    In Christ,
    Valerie Curren

    Liked by 2 people

    Reply

  2. Thank you very much for sharing Conner’s stories. The only other article about Conner was a few days after his surgery when one of the other admins wrote an update for the readers.

    Conner developed quite a following, and we had readers who frequently asked for Conner updates for over a year. We still occasionally get emails from the wonderful people who prayed for Conner during his illness.

    As you can see from the picture, Conner is quite a rounder. He is one of the most active and energetic toddlers I have ever been around. I fear we will have our assorted share of lumps and bumps and stitches as we can’t keep his feet on the ground. He loves to climb and jump.

    I still have frequent thoughts about the blessings our family received from Conner’s journey. I still remain committed to praying for all babies born with CHD, and most especially those who do not have the access to such world class care that Conner was given.

    My daughter in law remains involved with Project Heart.

    I’ll be reading your posts, and I appreciate your link, and your kind words. Thank you so much.

    Liked by 1 person

    Reply

    • We have received such prayer support over the years, especially during times of extreme stress, like major surgeries (heart, brain, & liver transplant) and to a lesser degree during some knock (ourselves) down, drag out battles with the special education establishment over the years. When Josiah had his liver transplant we literally had prayers going for him from across the country, and to a lesser degree around the world. Of course it helped to get that transplant call on Sunday morning, in time to disseminate the request to our various family & friend churches.

      We had a decent number of readers/prayer warriors following along for some medical play-by-play during the height of the transplant season, nearly 4 years ago now, at the CarePages.com medical based blog I keep. Readership has fallen off a bit in the years since, but we still have a few faithful prayer warriors that keep tabs on our situation through that vehicle.

      During those extremely painful, overwhelming, terrifying, & trying times it can seem as if the prayers of the saints are buoying us up and helping us through. I’m so glad that your family experienced similar support during heart surgery season. In our experience Congenital Heart Defects will require some degree of lifelong Pediatric Cardiology care…that, itself, can be a bit of a scary proposition…

      Because of the complexity of the special needs journey, and ours has been extremely complex, I often find some degree of comfort in reading of others’ journeys, both the “successes” & the “failures”, that some soujourners are willing to share. It seems to me that people that intersect the special needs arena (regardless if it’s medical, behavioral, therapeutic, educational, generational, or some other presentation) are forced by necessity to learn a new language, one that “regular” people never really “get”–and our fluency in this new language seems directly proportional to the degree of suffering and hardship we face in this domain.

      I was speaking to Brandon, Josiah’s twin brother the other day. My twins were born a minute apart…but their lives are worlds apart. I asked him if he ever encountered another set of twin brothers, where neither had special needs, did he think either of them would begin to comprehend his own relationship with his own twin, and he stated an extremely emphatic NO. People who don’t go through these experiences don’t really understand what people that do face & have to overcome…at least that’s my opinion & experience.

      I’ve signed up on a number of email lists in the special needs domain. For me personally, I have to gear up before reading (or writing) on these topics. However many times there has been much refreshment from fellow believers, often mothers &/or grandmothers, who share rather transparently about their experiences…and God’s matchless grace & provision!

      One source of encouragement are these website:

      http://specialneedsparenting.net/

      http://www.keyministry.org/specialneedsparenting/

      Perhaps you may find some sustenance in these places too.

      Blessings,

      Valerie

      Liked by 2 people

      Reply

    • This is a copy/paste of a post I replied to you (about autism) on my son Josiah’s Freak Show blog…I’m not sure if he’ll allow it in moderation, if he even knows how…& I wanted to share this info with you. Sorry if this is a duplicate somehow. Blessings, Valerie

      valeriecurren
      Your comment is awaiting moderation.

      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 2 people

      Reply

      • Thanks, I may be contacting you for that info. I’m walking a thin line, being the grandmother. My daughter in law, by her own admission – not criticizing here, really does not deal well with the medical profession and has a strong tendency to shut down completely when dealing with bad news. So I do not want to usurp her role, but I do want to help, and I absolutely want Mason to get the best care available.

        As you can imagine, this is something we are going to have to work out as we go along, and I will do my best to determine how I can help without crossing the line into intrusion and meddling.

        I really appreciate you taking time to put this info together, I am keeping it for our future needs.

        I will try to follow Josiah, and when he writes future posts that may be of interest to our readers at the Tree I will put a link in the comments on the Open Thread. He may get some interest from some of our people that way.

        Liked by 2 people

        Reply

        • I can appreciate that delicate balancing act with family! I met some families with autistic kids where it seemed like the parents weren’t very proactive about their kids’ needs (from my perspective) and it seemed that the kids suffered for not getting adequate intervention.

          On the other hand, there were times that Josiah’s needs consumed my life to the detriment of my marriage, my other kids, and myself. However, when I took about a yearlong break from therapies, etc (I think that was in the era where we’d been going to the hospital for outpatient therapies–PT, OT, & Speech–like 3 times a week for about 5 hours door-door time when I was hauling 4 preschool kids and losing my mind) and that “break” meant I had to watch Josiah deteriorate right before my eyes…my guilt & shame, and the fact I was a stay-at-home-mom with less excuses to shirk these needs than perhaps other families drove me back into seeking appropriate interventions…

          There really is no “right” way to do the parenting journey. Though as a Christian it seems vital to submit oneself to the Lord. We made extremely sacrificial choices as a family and Josiah has been the beneficiary…but these gains were hard fought & won at great cost in multiple domains…

          I hope you will keep in touch, as you are able, and share more about what’s going on with your extended clan.

          May the Lord grant you his Wisdom, His Mercy, and His Creative Genius as you tackle these arenas as a Warrior Grandmother…doing battle in the Kingdom (at least) on behalf of your loved ones!

          Thanks for thinking of Josiah & being willing to post links to his writings. I hope/pray that the Lord will continue to use his Unique Voice to bring Light into the Darkness…reaching eyes, ears & hearts of those who might never know some of these things of the Lord apart from someone like him proclaiming them boldly!

          Blessings,
          Valerie

          Liked by 2 people

          Reply

        • So I’m still working out my “social” blogging bugs here & have some major feet of clay…

          I couldn’t easily re-read my other reply before posting so sorry if it’s got “issues”…but I wanted to add in relation to your comments about “shutting down” & dealing with bad news…

          I absolutely get that & there’s zero judgement for anyone’s struggles here. For many years Every time I went to a medical appointment for Josiah I felt like someone had kicked me in the face and/or in the gut. It was absolutely overwhelming…and I had minimal places/people where processing was possible. It was even hard to focus on the road in transit from such visits…(news like “your son will likely never read or write or never walk or talk”–you can see how inaccurate the professionals were by what you see my son produce!)

          Virtually my entire Special Education interactions left me feeling sick inside, at least from 2001 to the present day…both in the lead up/prep phase to the aftermath and attempting to cope with the fallout thereof. There are so many alleged Rights, Protections, Guarantees, & Safety Nets that Should be in operation…sigh…

          If you read my blog post about “Only the Rich will have Rights” you can see some of that baggage writ large. I’m still coping with that, which is one of the reasons this SpecialConnections blog even exists…as a form of an outlet from all that…

          I still need to “gear up” to deal with Josiah’s “Transition Needs”…this was an arena that was Mandated by Special Education Law (as in should have been fully addressed and cost us nothing out of pocket) & which got virtually no real intervention…and “should have been” addressed for at least these last 6 years or more. I’m actually kind of angry with the whole situation in that his special needs’ Doctor basically said that if I want him to get any “Transition” (prep for post-high school education, employment, & independent living) it’s up to me. This is a huge burden to bear…but frankly he wouldn’t likely be nearly as far along as he is had we not already paid steep prices to get him what supports we could going along throughout his life…

          Anyway it doesn’t Have to be the Mom that tackles these kind of things for the family, but perhaps the person who’s best equipped for such tasks. Our Pastor & his wife intersected special needs when their middle son contracted Lyme Disease as a teenager. He had such significant complications that it forced this family off of the Mission Field (where they’d still rather be). It seemed that the Dad was the one more focused on Advocacy instead…

          Well, I wish that we’d had some help in the early years when things were so intense. Autism really got back-burner treatment because some to the medical things going on were predominant. The whole “thing” was incredibly overwhelming (and in many ways still is–& I feel like such a “whiner” even speaking dispassionately & factually about some of our experiences)…I just hope & pray that your grandson and your whole family gets the support they need–you know, hindsight & all!

          Liked by 2 people

          Reply

          • When I a few of your posts I was amazed at how you have taken all this on and stood up to it. For a year or so I took Mason to most of his therapy appointments, before he had quite as many as he has now. Now my DIL takes him, along with Conner when their oldest child, my 5 year old granddaughter is in school. When school is out, she takes all three of them to multiple appointments weekly, a few that are run on multiple appointment days.

            I am truly awed at the results you have obtained for Josiah, encouraged, and also a little apprehensive as I try to get my son and daughter in law to the point of passionate advocacy. My DIL is a beautiful and gentle soul, not an ounce of push back dominance in her. I don’t know if she is going to be able to push for Mason. It may have to be someone else.

            Mason has as many traits that make it seem he is not autistic as he does ones that are common to autistic kids. He has made tremendous progress in the last two years. He now has a very good vocabulary for a four year old. When he started speech therapy he spoke only about 20 words, no sentences. He loves to learn, but really needs one on one encouragement.

            My biggest concern about him going to school is that he is not social with other children. He is not disturbed by them usually, or hostile, but he almost always chooses to play alone and does not want to share his favorite toy of the moment. He will usually do that when you encourage and ask him. Also, he occasionally has some really nasty “fits” when he gets angry. Those are much more rare now that he can talk and communicate. When he had no words, and was unable to express to us what he wanted or needed or felt, it was pretty common.

            Mason and I developed a very close relationship when I took him to therapy. It started as help for my DIL who needed it, and it turned into an indescribable closeness and love beyond what I feel for my other grandchildren. It’s not favoritis
            m, but a connection that I have been convinced he needs. I have thought for a long time that I need to play a certain rile in his life, and sometimes it feels like God is knocking on my door, pointing out that He has given me time to help.

            I can only try to do the best I can for all of my grandchildren as they need me, to help my sons and daughters in law as much as I can, while trying to not be intrusive into their lives. I find that balancing act to be somewhat difficult. My own mother in law was an awesome help to me, and she absolutely never tried to involve or push herself into our personal lives. My mother was a big help and had to be beat back from the nosy door every day. As you can imagine, I want to be like my mother in law.

            And yet I sense I need to me an advocate for Mason. I pray the Lord will give me discernment and strength, as well as compassion and perseverance.

            Incidentally, and of no importance, just a side note. Sadie, the five year old, had speech therapy for several years too. She had pronunciation problems and did not talk in sentences and expand her vocabulary as soon as she should have. Then Mason had his problems. Conner on the other hand, is a parrot. He repeats every word everyone says, and has a very large vocabulary. He started talking pretty early, and his pronunciation is very good. He seems to be a little advanced in his learning, but we shall see.

            I thought my oldest son was precocious, and he did have an extremely good vocabulary, talked very early, and was a nightmare in school. He was diagnosed with ADHD back in the early days of the diagnosis. I still don’t know how I feel about that. No drug ever helped him, and it very frequently felt like no teacher wanted to have a child like him in her classroom. When he got individual attention he learned. When he got a bitter shuffle him off teacher he didn’t. But he did make it through school.

            Once again, thank you for your reaching out, and your words of wisdom. I really appreciate it, because my son and DIL do not have any financial resources to pay for out of pocket extra therapies and so on. They will still be paying medical bills if they live to be 90 it looks like.

            Liked by 2 people

            Reply

            • I’m going to reply to you in several posts to tackle some of the different points you raise…after I get some sleep! I meant to be up later taking care of my winding down Ancestry.com subscription…but extra teens over for the night took over that computer room. I really appreciate what you’ve been sharing.
              Regarding some of the financial aspects of disability care, if you’d care to share your email with me
              ValerieCurren@sbcglobal.net
              I’ll reply privately on topics my husband prefers to be kept closer to the vest…Blessings, Valerie

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                • Great, I’ll reply to you that way with a few more specifics in the financial domain…Here’s just some more generalized info related to saving funds with disabilities & kids (we’ve used most of these strategies with varying degrees of success):

                  Asking for discounts

                  Seeing if a provider might accept the Insurance payment only & waive our co-pays

                  Only seeing providers that accept (all of) our insurances, in-network, etc

                  Stating specifically up front that we need to be careful of the money side to avoid issues

                  Shopping at re-sale stores (our kids new clothes only came as presents)

                  Speaking with Social Workers for specific help in the financial domain

                  Using search engines to look for “Free” resources

                  Requesting advocacy help, got a free advocate from a local ARC

                  Going through Protection & Advocacy to get a free Advocate during special ed case

                  Researching online ad nauseum to find free resources locally & further afield

                  Participating in a babysitting co-op to swap child care with other families

                  Taking advantage of free services through Josiah’s doctor, SW, tutoring, sibshops, etc

                  Going to some Parent Input meetings for state insurance, etc, & getting paid stipends

                  County-level Health Department Nursing & Counseling visits for free

                  Respite Care, in-home & center-based, through Community Mental Health

                  Advocating for all special education services needed (free by law)

                  Vacation Bible Schools during summers when special ed denied summer interventions

                  Participating in local sports programs underwritten by generous donors

                  Children’s Church drama opportunities for fellowship & Christian input

                  Sunday School interventions, sharing J’s needs w/teachers to accommodate

                  Church activities that were underwritten by the church

                  Public Library offerings, summer reading programs, crafts, etc

                  Signing up for special therapy offerings, Summer, Music, etc, covered by insurance

                  Having a Zero Dollar Entertainment budget, borrowing DVDs & Video Games from library

                  Looking for free stuff to do in books, online, radio, etc

                  Checking out free activity passes from Library to get free admission to some attractions

                  Visiting some local attractions as guests on relatives passes

                  Learning to do without…& living with it…

                  In a pinch visiting a free medical or dental clinic

                  Treating most illnesses at home to avoid doctor/hospital/ER costs (my mom’s an RN)

                  Researching remedies online (like self-curing UTIs w/out antibiotics)

                  I’ll share a bit more specific stuff with you via email.

                  Blessings & Hang in There!

                  Valerie

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            • From our experience, at least my personal perspective, what it took for us to get Josiah to the place where he is was quite costly (on multiple fronts) & overwhelming. There have been interventions on many fronts & quality care by many people but the bulk of the “work” related to managing his needs has fallen on me…

              Depending on the severity of issues that need to be addressed it is likely that Some type of advocacy is in order. There are so many sources of info online & if you are at all research minded you can unearth pretty amazing resources. Definitely bathing your family’s needs in prayer is of predominant importance…God is at work, he is the Great Physician and the author of life & health. Getting quality and appropriate medical, therapeutic, and educational interventions can really be a lifelong dance.

              Depending on where you live there may be significant resources available to you and your family. Here are some things that come to mind, in no particular order:

              Behavioral Pediatrician, or another discipline with autism/communication disorders focus
              State Resources via the Web for education law, community mental health, insurances…
              Wrightslaw.com for special ed advocacy, including by disability or state topics
              Autism Speaks, they have a free handbook on managing autism, I believe
              CHADD–Children & Adults w/Autism/ADD/ADHD, I believe…many resources here
              ARC–local chapter, for advocacy help with developmental disabilities, etc
              Social Workers–in hospital, specialty clinics, CMH, therapeutic organizations, etc
              Early On Program (or whatever pre-school support program exists)
              County-level Health Department
              Neuro-Psychologist to perform Neuro-Psych testing, crucial to remediate school concerns
              Communication Disorders & Autism support organizations
              Free Legal Help, Universities w/Law Schools, Legal Aid, etc
              Protection and Advocacy–funded by the feds & to assist the “disabled”
              Support Groups-for various disability categories
              Autism-related dietary supports (we never used these)
              Community Mental Health or other state supported disability care organizations
              Local School Board, or County Level materials, personal contacts…
              Training in special ed & disability advocacy
              Communicate with other families, especially in your area, to get info/support
              Education-take free online courses/seminars, review power points, etc…

              It can be a Really Big Twinkie and it can only be “eaten” one bite at a time…

              Depending on your relationship with your daughter-in-law, consider having a relatively frank discussion with her…perhaps take her out to lunch (without the kids) and discuss some of your concerns and willingness to step in and “stand in the gap” in support of her and the kids. Have pre-planning sessions prior to key meetings, like IEPs (special ed planning meetings where legally binding controlling documents to guide education are created &/or modified) to make sure your goals are aligned (Once my mom came to an IEP to support me/Josiah & sided with the school because she was a peacemaker & didn’t like the tension of the inherent conflict on display–I had to later remind her that she was there as a support to us, Not to bolster the school’s position, so if she disagreed with our approach she needed to speak with me privately, not undercut me during an IEP!)–Being willing to be Grand-Mama Bear may be a relief for a Mom who’s more of a pussycat…

              Praying for wisdom, favor, guidance, creative problem solving, healing, growth…etc…

              Your heart for your grand-kids really shines through. Your Love, surrender to the Lord’s will, and your ability to step into the fray and be a scrapper, if that’s what they need/want, when the time comes, will stand you in good stead. I’ll be praying for you and your family!

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            • Sadie’s challenges are of importance too. It’s kind of sad but sometimes the other kids can get a bit of short shrift (speaking from my own experience here) because major needs of a sibling can take preeminence. Clarissa used to say she wished she could go to therapy because she saw Josiah having all sorts of “fun” (how they have to make “play” therapeutic for younger kids), and later when she was in elementary school she also ended up having Speech Therapy for a season to correct a lisping “S” and to help with her vocal timbre. Her first grade teacher begged me to get her into Speech because C’s voice at the time went through her head…

              We also ended up getting Clarissa some Tutoring along with Josiah, to help address some ADHD concerns. I honestly don’t now recall if we also got Nathaniel tutoring for ADHD or not….Because of the magnitude of J’s educational issues N & C Never wanted to get IEP/Section 504 educational support. However during C’s senior year in High School we got her a 504 Plan, but since it required her to initiate most of the interventions it was basically ineffective…the same challenge we have run into for her in College…sigh…She’s extremely bright & capable, but the ADHD can create some pretty big learning issues…

              Is this oldest son the father of Mason? My husband had un-diagnosed ADHD as a child (with similar educational experiences to what you described for your son)…we only realized it when completing ADHD inventories about Josiah & Michael kept seeing himself in the descriptors (what’s wrong with that, he asked?)…since it seems that Neuro-Biological Disorders may have a genetic component, hmm…Michael did take some ADHD meds for a season as an adult but really didn’t like the side effects; in fact, the only time in our 25 year marriage that he actually finished an extended family meal, dessert, & ensuing conversation at the table with the rest of us was when he was taking ADHD meds–Wow! Nathaniel actually uses Caffeine as a form of ADHD med, it calms him down rather than revving him up. My husband may drink alcohol & order the spiciest dish on the menu so that he can focus & interact with me conversationally if we ever to get out on a date! Both M & N have learned various coping strategies so that ADHD doesn’t interfere too much in their work/personal lives. Clarissa & Josiah seem relatively happy allowing their attention to skip along, only catching bits & pieces of movies &/or lectures. I don’t know how they do it, it would drive me crazy to only partially get what’s going on around me…but they both seem to do pretty well in spite of things. Clarissa won’t consider learning some of the other jobs where she and Brandon work (he’s trained in every position but manager) because she recognizes that her ADHD tendencies would cause multiple challenges for her in some of those other positions…

              Honestly it’s possible that there is some degree of ADHD in my family too. My one brother had his son diagnosed with it & my brother’s behavior in childhood displayed quite a few of the tendencies. Both of my parents have some of the traits & my other brother’s kids (at least 2 of his 5) exhibit some traits–though there are no diagnoses for them. Reading some material years back in gearing up for Josiah’s special ed battles lead me to some info on females with ADHD. I definitely have some of those traits (it’s diagnosed much less frequently in girls) but not to the degree my daughter does. It’s possible that to some extent this “diagnosis” is more along the lines of stigmatizing normal boy behavior…

              There was a book a few years back with a title roughly “Hunter in a Farmer’s World”. The implication, as I understand it, was that people exhibiting ADHD tendencies used to be the leaders of tribes, the best hunters, etc. However, now with more sedentary lifestyles, jobs, & educational expectations these high intensity, extremely vigilant, quick reflexes & minds people may have a harder time fitting in. The “farmer” being more comfortable with plodding, routine, consistent activities that would bore the ADHD person out of their mind. This Hunter vs Farmer paradigm is one I use with our family as a form of complementing all the Hunters that live here…

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            • THIS IS A DUPLICATE POSTING TO THE REPLY TO MENAGERIE BELOW, BECAUSE IT WAS HARD TO READ WITH SUCH A NARROW WRITING WINDOW…THE ORIGINAL DATE/TIME IS IMMEDIATELY BELOW…
              valeriecurren says:
              June 25, 2017 at 1:11 am

              Great, I’ll reply to you that way with a few more specifics in the financial domain…Here’s just some more generalized info related to saving funds with disabilities & kids (we’ve used most of these strategies with varying degrees of success):

              Asking for discounts

              Seeing if a provider might accept the Insurance payment only & waive our co-pays

              Only seeing providers that accept (all of) our insurances, in-network, etc

              Stating specifically up front that we need to be careful of the money side to avoid issues

              Shopping at re-sale stores (our kids new clothes only came as presents)

              Speaking with Social Workers for specific help in the financial domain

              Using search engines to look for “Free” resources

              Requesting advocacy help, got a free advocate from a local ARC

              Going through Protection & Advocacy to get a free Advocate during special ed case

              Researching online ad nauseum to find free resources locally & further afield

              Participating in a babysitting co-op to swap child care with other families

              Taking advantage of free services through Josiah’s doctor, SW, tutoring, sibshops, etc

              Going to some Parent Input meetings for state insurance, etc, & getting paid stipends

              County-level Health Department Nursing & Counseling visits for free

              Respite Care, in-home & center-based, through Community Mental Health

              Advocating for all special education services needed (free by law)

              Vacation Bible Schools during summers when special ed denied summer interventions

              Participating in local sports programs underwritten by generous donors

              Children’s Church drama opportunities for fellowship & Christian input

              Sunday School interventions, sharing J’s needs w/teachers to accommodate

              Church activities that were underwritten by the church

              Public Library offerings, summer reading programs, crafts, etc

              Signing up for special therapy offerings, Summer, Music, etc, covered by insurance

              Having a Zero Dollar Entertainment budget, borrowing DVDs & Video Games from library

              Looking for free stuff to do in books, online, radio, etc

              Checking out free activity passes from Library to get free admission to some attractions

              Visiting some local attractions as guests on relatives passes

              Learning to do without…& living with it…

              In a pinch visiting a free medical or dental clinic

              Treating most illnesses at home to avoid doctor/hospital/ER costs (my mom’s an RN)

              Researching remedies online (like self-curing UTIs w/out antibiotics)

              I’ll share a bit more specific stuff with you via email.

              Blessings & Hang in There!

              Valerie

              Liked by 1 person

              Reply

  3. Thanks for sharing the links. What a journey you guys have made, are still making. BTW, there is a family at our church who have twin sons, probably now about five I’m guessing. One of them has Downs Syndrome.

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    • Having “unequal” twins is nothing like the parenting books about raising “multiples” discuss. I remember reading how the twins would do everything together, I’d feed them from the same spoon, etc. The first time I attempted to feed Josiah with a spoon (months after Brandon was spoon fed) he just looked at the food on the spoon & literally threw up–the therapists had to train him to overcome “oral defensiveness”, likely an offshoot of autism, not that we knew that then!

      Hopefully your church associates are handling the challenges OK…God’s Grace IS sufficient (whether we feel like it is or not). Twins are a blessing, a Lot of work when younger, and a whole different universe when special needs are involved!

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      • Here is a link. They were very helpful to my daughter in law when she was in Nashville at Vanderbilt, and they went back when Conner was about 8 or 9 months old and he was part of a promotional film and commercial they made.

        At Conner’s first birthday party the whole family had Project Heart shirts and they asked for donations in lieu of presents, and sent them in to PH.

        https://projectheart.org/

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        • Thanks. That’s one part of the disability journey I/we didn’t do that well…get connected to other people going through “similar” things. I’d heard about NICU graduates, summer camps for various disabilities, support groups, etc…things just never worked out in that domain for us…it was either timing, or finances, or even just forgetfulness where I’d mean to go but get distracted…honestly everything was just so exhausting on a day-in-day-out basis that adding one more item to the list seemed overwhelming.

          I got my husband to go with me once to an event (free w/ dinner & childcare provided) and it was really good to hear other people’s stories & share some of our own. However, at the end my husband said he’d only done it for me…that he didn’t have any needs/issues as a special needs dad. That’s not how it seemed to me living in our family…but then the special needs issues did always seem to weigh more heavily on me (perhaps) than others in the family.

          In the early years I made deliberate choices to keep Josiah with me and let Michael & the other kids have some special times together, hoping that this would allow them to have more “normal” relationships amongst themselves. I didn’t want everyone to be resentful of some aspects of the behavioral issues etc out in public so Chose to stay isolated with Josiah….

          I’ll check out that Project Heart site & see if there’s some insight & encouragement there. Currently the Heart situation is fairly back burner since it sounds like we’ve probably got at least another decade before another Heart Surgery might be necessary–Thankfully! Of course things can change on a dime so we’re trying to take it one day at a time…

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  4. Skipping down here to have more room. Valerie, I love the hunter vs farmer analogy. Years ago when my oldest was having so many problems in school, my sister in law said part of it was the fact that he was an active young boy being raised by an honest to goodness man, that he was growing up masculine in an age that tried to destroy that type of masculinity.

    We both knew that wasn’t his whole problem, but yes, it was part of it.

    There was no such thing as ADHD in our day, but yes, my husband had it. I met him in our senior year of high school.

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    • What you are describing sounds like how my brothers & our sons are raised. It’s terribly destructive to try to rip healthy, godly masculinity out of our culture…to stifle it, stigmatize it, & even criminalize it.

      I’m going to have to look for more of your writings on masculinity at the Treehouse, as I’ve enjoyed similar offerings at Breitbart, PJMedia, & American Thinker…as well as WorldNetDaily.

      It’s quite ironic that we need Women to speak up for Men…to actually allow men to be men!

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