In a recent daily opener I promised fellow Qtreepers with a health status update on our now ten year old grandson once he finished his scheduled medical appointments. With my last Heads Up on the subject I felt we had arrived at a conclusion, that we had discovered all he needed and that he would then be on the path to becoming his best self.
God had other ideas. Glad we paid attention.
But first…
The State of Traditional Medicine
Even from the cheap seats we see how the game is being played. To be sure there are knowledgeable, caring people throughout the medical industry who truly seek to help others. We should not lose sight of the truth that God also chooses to use that method to heal His people and we should be thankful for their efforts. Then there are also the piranha who devise schemes, develop pharmaceutical concoctions, mutilate bodies and such that perpetuate suffering to increase their wealth and gain power. They turn themselves and their patients, many of which are who are mentally ill and/or sin consumed, into ghouls and zombies that they use for nefarious purposes as well as for their own sick entertainment.
There is no point in regurgitating what we all know as the truth now. The participants in this game of death and destruction are easy to identify. It is what it is.
However, the light being shone on it all has helped greatly. It has pushed many of us to not use traditional medicine unless it is the only reasonable approach to solving a health issue. This cautious response is reflective of reality; we no longer trust them or other institutions and industries like the media, public schools, banking, woke big box chains, political parties and even religious denominations. The trust we have in our government is probably below zero. This distrust is well established from observable events, experiences, knowledge and truth. In the long run the distrust becomes the catalyst for positive change. This Heads Up is a direct result of our highly personal experiences that have contributed to our now total distrust of traditional medicine and public schools. I sincerely hope your experiences have been different.
Situation
Those of you who have followed our grandson’s health journey know that things came to a head over a year ago. I had posted numerous times in the daily openers about his issues originating from birth trauma. We have followed a path and taken to heart the many helpful pieces of advice and caring we have received from all of you. It has been such a blessing. When your advice applied to our situation, we followed it, learned a great deal and gained benefits.
To recap and help those who have not followed the story, the medical issues with him seemed to have been set in motion by serious birth trauma. His mom, our daughter, was in heavy labor for nearly four hours and the boy was stuck in the birth canal for nearly two hours as she attempted to deliver naturally. You could actually see the top of his head, but he was turned wrong. No manipulation by the doctor and nursing staff could change his position. Her husband, his mother, my wife and I were in the delivery room. The doctor finally called a halt to it and performed an emergency Caesarian. To be sure the doctor waiting that long contributed to the trauma despite our daughter’s insistence to continue to try. He was the medical professional in command, he should have made the call earlier.
No doubt this event triggered a myriad of health issues. He has experienced serious sensory issues, reflux, needed scopes of upper/lower GI to determine he had lactose intolerance, allergies, tonsils/adenoids/ear issues, absence seizures (more on that later), spinal issues, hip alignment issues, lack of coordination, nerve issues in hands and arms, seriously underweight, IEP in schools due to physical issues, and so on. Despite it all his behavior has been outstanding; happy, helpful, and desiring to do his best. Everybody loves our boy and he is a light unto the world.
We have worked with two pediatricians, two pediatric neurologists, a gastroenterologist, a pediatric ENT, a chiropractor, an allergist, OT specialists, PT specialists, a sensory/food therapist, optometrists, dentists and more. We could sense and have observed that medications that had been prescribed by many were not providing any benefits, only more problems. He’s had every conceivable medical test for all of it including blood labs, EEGs, EKGs, MRI, Catscans, X-rays, allergy testing, scopes, digestive system biopsy, etc.
He has been diagnosed by medical professionals with the list of conditions above as well as being diagnosed as epileptic with childhood absence seizures, ADHD, and an IQ of 66 by an idgit school psychologist. The idgit admitted to not following the IEP when testing and that the result was not indicative of a child who was easily performing grade level work in the classroom with a B+ average.
With many of the health conditions he was prescribed medications, one of which by the first neurologist is routinely prescribed for adults with serious bipolar disorders that would be classified on the lower end of the narcotics scale. He prescribed this med for a severely underweight 8 year old when the med was for adults and was never to be given to any patient under the age of 10. It got to the point our grandson began hallucinating and becoming severely sleep deprived taking that one.
We were losing our boy thanks to the traditional medical industry’s quackery that the AMA endorses.
The Journey to Good Health
Following the right path began when we said, “Enough!” It was time to stop listening to the “professionals”. It was time for our family unit to take over and fully trust the Lord for his provision for our grandson. Now to be sure, we had prayed out hearts out for solutions prior to this point. But for every seemingly clear path to resolution there were negative results in the end. This time we needed to be more discerning. We researched all alternatives, talked to family and friends (including here) and prayed it out going back to the beginning and starting over.
This led almost immediately to a two prong approach that God placed in our collective minds and hearts. First, wean him off all meds whether the medical professionals agreed or not. It was past time to establish a new baseline. When his then neurologist was approached to give the method for doing so with the two prescribed meds he refused and belligerently told our grandson’s mom, our daughter, that they would regret doing that. This was our collective response to that azzhat.
🖕
Not very Christ-like, but appropriate. I confess I was the leader in the salute and have remained the enforcer against all problem causers as the patriarch of our family unit. Nobody will ever mess with my family again as long as I am breathing.
Next, I consulted with folks on here and his pediatrician. We decided on a schedule for weaning from the input and completed it without issue.
The second thing we did was begin treatments with a highly respected, accomplished chiropractor who immediately diagnosed serious misalignment of his hips, lumbar spine and atlas that were easy to see in his X-rays. In summary, he was so horribly misaligned that part of his body was not providing channels for neurons to fire to his brain. He literally did not have his head on straight. To stay balanced so he could walk his head listed to one side, which contributed to the misalignment. This explained his lack of coordination and need for intensive OT and PT. Over the ensuing months of adjustments his physical response was nothing short of remarkable and continues today. He is now aligned and within all recommended tolerances.
The school dropped PT from his IEP as he was at peer performance in less than six months. This was after their school PT stated in an IEP meeting he had a 5% chance of being physically normal based on her experiences with him. Because of her lack of success, we chose to use private PT services during which time he progressed so quickly he was released in 5 weeks of bi-weekly therapy. The neurons were firing as they should and his energy level and coordination were improving rapidly. The chiro continues to provide maintenance for him and has been an incredible resource for recommendations that relate to his condition. She studied the brain extensively in her education, so she knows how it all ties together.
At this point after successfully handling the first two prongs, we knew the Lord had us on the right path and were blessed. That’s a mighty good feeling to have, folks. It only fired us up more to keep going.
We were also fortunate in that his pediatrician held the chiro in high regard as he and his family were also her patients. So there was no pushback with it.
The third action endorsed by his pediatrician and chiro was to consult with a different, more competent neurologist as we were all still under the assumption he was afflicted with absence seizures that had developed at school at the start of masking for COVID. A battery of tests were completed that included blood labs, EEG, MRI, and genetic tests. Other than a couple of blood markers impacted by prescribed meds which have subsequently returned to normal today, he tested negative for any medical issues of significance at all. We continued a low dose of the seizure med to potentially reduce the number of seizure occurrences in school. It was more for the teachers who freaked even if he looked up to sneeze. There were no events observed at home the entire time.
Due to the retraced pathways in his body, the neurons firing were causing a spike in hyperactivity and focus loss. It takes the body awhile to adjust, just as the chiro told us at the beginning of treatments. His pediatrician prescribed a non-stimulant ADHD med. I consulted with Wolf, who urged great caution and we went low dose with careful observation to see if it helped.
The fourth thing we chose to do was restart sensory and food therapy. This has been successful and his nutrition is improving. The therapist has him trying new foods for the first time, some of which he has loved. He has recently developed a more normal appetite. During this process she noticed tongue issues with eating and physical reactions with sensory that seemed to indicate a need for more intensive OT. She recommended local therapists who had been successful with other patients. They performed an evaluation and diagnosed him with dyspraxia, which is a chronic developmental coordination disorder that is helped by therapy, that also exhibits symptoms of ADHD. 💡 moment. This explained why his pediatrician’s diagnosis and subsequent prescription to treat ADHD did not work. We immediately began weaning him off the med and informed the pediatrician, who was none too pleased but went along with it. There had been no significant improvement in the ADHD symptoms on the med anyway.
One Year Later from the Reboot
It was April of this year and his parents were getting closer to the annual IEP conference at school scheduled for early May. They invited me to join them.
👍😀
We updated the group with his medical progress and they did his IEP review. It was clear to all his bad handwriting was causing him to be graded lower than he would normally earn on tests. At times they could not read what he had written. So, instead of asking him or even verbally testing him, they counted it wrong. Which is a violation of the IEP. 😖
At that point I asked them if they had read the information we sent on his dyspraxia diagnosis from the outside OT practitioners. Other than his assigned case worker, it was clear that none had as they could not answer simple questions about it. I asked them why he was not allowed to test by typing answers on his chrome book that all students have and use. They admitted they never thought of doing that. I pointed out the recommendation was in the information we sent a few months before on the disorder. That it should have been added to the IEP at that point. Regardless, it was their responsibility to test in accordance with the IEP that provided for verbal answers on tests.
Of course they could have used common sense and tried typing without our recommendation and information. But a teacher or case worker would have to care enough to think about what might work better. That was asking too much apparently. As human beings with their own children and families, why would they not want to do what was best for the students they are supposedly teaching? I honestly do not know how some people sleep at night.
We exited the meeting and his school OT who periodically participates in them stopped us outside in the parking lot. She said that she appreciated what we tried to do each time it was held, which was to educate the people in the room. She stated we were similar in our approaches when conditions warranted it, we thought outside of the box. I replied that she was correct, we understood the info we provided and were busy learning and implementing more; that traditional medicine had led us down the wrong roads.
We told her we wanted the people in the meeting to know and do something about it that would help our grandson as well as other kids. It was at that point she said she knew of somebody she thought could help him. She and his outside OT practitioners had both observed that his eyes did not see and focus correctly, that he had to turn his head to see to the outside of his field of vision. His eyes would not move together toward the object. This matched up with our observation that it was hard to get him to look straight into our faces when talking to him. He also turns his legs and body sideways on his chair at the table when he eats. She said she knew of a highly respected optometrist who specialized in the condition who had really helped another student who had once used her OT services, but no longer needed them. We thanked her, took down the name and told her we would keep her informed.
This school OT is stretched thin by the state. She works in multiple county school systems, but lives near us in our community. She has seen a great deal in her career and loves our grandson. She has a young adult son who was IEP and had severe hearing loss from birth. The school staff and medical professionals gave him little hope of graduating high school, much less going to college. She and her teacher/coach husband followed a non-traditional medicine and schooling path that led to their son graduating from high school with a 3.9 GPA and going on to college. So there’s that, the common thread.
Binocular Vision
Our grandson’s parents took him to the recommended optometrist recently. In the initial thirty minutes of the evaluation, another major piece to his current health journey was added to the puzzle. The optometrist is in his 70s and has seen it all. He is a fine Christian man with a great sense of humor who has a 120 acre working farm. He jokes that when he gets tired of working on his farm, he goes to work in his practice. He has helped thousands of patients through the years and specializes in Binocular Vision issues of all ages. Within minutes of the exam, he clearly identified the problem and told his parents what would happen from there. Our grandson will wear specialized glasses with prisms to correct the problem. The links below describe.
https://www.healthline.com/health/internuclear-ophthalmoplegia#symptoms
Bingo. He has the bilateral INO described in the second link.
When informed his occupational therapists became excited. It made great sense to them from their observations. They wanted to know more and asked for the optometrist’s information. They feel it is interconnected with him and could be with other patients they serve with dyspraxia. They expect the treatment of his eyes will greatly improve the situation with their OT plan, which has already been producing very positive results. There are many common symptoms, which once again include ADHD type symptoms with both. Another confirmation that the pediatrician’s diagnosis was wrong, which meant the prescribed med was unneeded.
Our grandson is even excited. He gets to wear cool red framed glasses. You can tell he senses he is going to be “fixed” as he calls it. They have to be worn every waking moment of every day. We have sold it to him that Mamaw and Papaw wear glasses and once he finishes the therapy he will be able to play basketball like his favorite Vol ballplayer, Zakai Zeigler.
I am also happy to report that the optometrist’s son is completing his education to join his father and take over the practice in the future. People in our area will continue to receive this very important therapy by people who care and know what they are doing.
Next Steps
He has been fitted for the glasses, which will be in soon. He will then have weekly eye therapy for 4 months to become acclimated and improve the condition. If things go well, he will be able to see and do things like never before. First, it is important to know that he has no other vision issues with his eyes. He is 20/20 with no concerns as tested by the first optometrist and confirmed with this one. They just do not focus and work together. Second, correction of the condition will strongly help the other therapies be more effective and improve his self confidence. The optometrist believes that the situation with his condition will lead to his eyes being retrained and him being fully healed over a reasonable period of time. At that point he will no longer wear the glasses.
His parents have already weaned him off the seizure med on their own. They will take him for a follow-up exam with the neurologist soon, which will hopefully be his last.
The seizures were never from an epileptic condition because they were not really seizures. The previous testing confirmed that he did not have epilepsy in any form and as a result, the events were not absence seizures. They were sensory overload reactions from the Binocular Vision issues and were exactly as described in the BVD information provided and explained by the farmer optometrist as a symptom. Yet, all of the medical professionals over nearly three years were making wrong diagnoses and prescribing meds without attempting to address the underlying, physical body issues that caused the concerns.
Traditional Medicine and Education Autopsy
So how well educated and trained are the “professionals” in the traditional medical community in their “specialties”? How do pediatricians not diagnose or even suspect they need to order scans for children who do not stand up straight or have balance problems in their exams and physicals? How did this pediatrician go direct to an ADHD diagnosis and not consider other causes, nor diagnose the dyspraxia after over 8 years of regular exams and consultations about his patient’s progress? Dyspraxia affects about 5% of all children. Seems like that might be one he should know something about. But he has company, the one before him and his current partner did not know anything about the conditions either.
Why do these professionals not see there are underlying problems when a child is extremely uncoordinated, underweight, could not walk without therapy by age two and never crawled normally prior to that? How do neurologists, highly educated and trained, not know to look for causes of focus events and seeming seizures being possibly related to other conditions such as vision issues even after thorough testing reveals there are no underlying medical issues relating to the brain and CNS of note? Why did she continue the absence seizure med when the tests for epilepsy as a cause were negative? What did this farmer optometrist see that all the rest did not? Why did the first optometrist not detect the same problem that the old funny farmer optometrist found within minutes of sitting with our grandson? It’s not like BVD is an unknown in their profession and he was told that our grandson’s therapists suspected eye issues.
Even if they did not possess common sense, why did the “professionals” in the schools that focus on kids with IEPs not at least read the medical evaluations and information we provided them multiple times over 5 years as our grandson was treated? Maybe they could contribute even a little to his educational progress instead of sending the work home for his parents and us to help him when he could not do it in class. Only one very busy OT took time to connect some dots in all those years.
We have these and many other questions that are actually rhetorical in nature. As most Qtreepers know, traditional medicine is broken and most of us know why. If the industry actually was trained to interconnect their “specialities” better, to consult with one another concerning patient care, healing would occur on a massive scale and there would be less money and power in it for the scumbags who undermine everybody. Traditional medicine, just like public schools, has been reduced to box checking and only in their speciality. If Sundance wants to use his silos analogy, this would be the time to use it with the medical industry.
As a result, it is on all of us to take care of us while using caring people outside the scope of the box checkers’ control.
Conclusion
Normally this story would end here. But as the Lord would have it (again), in our research we found that people with inner ear disorders, even those previously diagnosed with Meniere’s Disease like wifey, frequently find that BVD is a root cause. As wifey researched it the 💡💡💡 came on. She worked through the symptoms and yup, they matched hers. The chiro adjustments opened her eustachian tube to release fluids from her inner ear and that has helped greatly with travel and everyday living. However, for decades she has told me about how stationary items will seem to move toward her when she is on the move, which created dizziness. That has continued. This led me to remember a photo taken of her over 20 years ago when her eyes noticeably looked to turn outwards from the normal field of vision as she looked at the camera. I made a note of it in my memory as it seemed odd. But through the years she has stated when I was driving that sometimes it was like she was seeing two different things in each eye, which caused anxiety and panic. These events were random, they would come and go as she was able to adjust her sight onto something specific. Turns out what she endures is as described in the link for INO. It is most likely wall-eyed bilateral, WEBINO.
She made her appointment. However, her sister who has also suffered from inner ear related dizziness for several years beat her to it after they discussed the situation with the grandson and studied BVD together. Her appointment is first. Sisterly competition never ends of course. We also may have found a condition that has been passed down to family members through the years. That will be useful to know for the benefit of future generations as well as for friends.
I will keep everybody informed.
Be blessed and live life to the fullest. And always think outside the box.
Wow! That is incredible. I am so glad for your grandson that he had you and his parents to continue to advocate for him, and look hard for answers. I’m so glad you found them!
I will tell you a bit about my experience with IEP for my oldest son, as a warning and an example of how the system fails these children.
In first grade, the school attempted to put my son into “special ed.” They thought he was low I.Q., just like the idiot who tested your grandson. I immediately went into overdrive, and found a first-class neurology team in nearby city.
They tested my son six ways from Sunday, and found out he had a disability that involved the connection between the information coming into his vision and how that information could be expressed. They determined he should pretty much always be verbally tested. Later, typing was an avenue that worked for him, once that was a thing.
They also determined that his I.Q. was at the genius level! This child the school wanted in the “slow class” was smarter than his teachers.
I tell you all of this because, even with the IEP in place, with data from multiple specialists, with meetings with me and others, I fought the school system without ceasing to actually IMPLEMENT the carefully crafted IEP until the day my son graduated high school.
The “system” does not much care for “different” children, no matter what lip-service they pay them. So be ready to fight like hell for that precious child for a long, long, time. Unless you are luckier than I was, you will have to if he is to remain in public school and be successful. Which sucks, but it is reality.
Oh, and great news about your wife, too!
Thanks for your input and well wishes. Wifey is upbeat about this possibility. So happy you bull dogged it for your son. You had to feel vindicated.
We have already been through this IEP stuff once with our daughter and it was just as you described. She had CAPD and worked her tail off to move past it. She only aced Anatomy I and II in college with other coursework to became a nurse in a major hospital and later a middle school special ed teacher. But hey, she’s dumb.
His parents have been doing the work to determine the best home schooling method, but have not made a formal decision yet because of a recent development. A local man we know well left a long term sports journalism career not long ago to go back for a Masters Degree and teaching certificate to work with resource related kids. He began teaching last year and would be assigned as our grandson’s resource teacher for 1.5 hours per day while doing grade level work. The guy is a gem of a human being and parents are raving about his work this past school year.
His parents are going to monitor the progress with his BVD and make a decision in a couple of months. Regardless, they will be prepared to home school if necessary and would anyway except our grandson is so social and loves school.
Whichever way they decide to go, I know it will work out well. You guys are on it!
I concur w/ your IEP insights per my nearly 2 decades of battles w/ special ed people! Your son was very blessed to have you in his corner!!!
I suspect that a lot of the “AI is going to kill us all!” headlines are tied to the death of credentialism. All of the “professionals” that interacted with your grandson had credentials — sometimes several — and still couldn’t accurately observe, consider, and diagnose.
So true. The part that bothered me the most is the ones that do not care about their product, the kids, yet are still receiving a paycheck while pretending to do their jobs.
YES!!!!!!!
At least your grandson is getting a very early lesson on why never to trust the current medical system. It may very well save his life one day.
👍 Truth. Thanks for reading, Sadie.
Thank you for sharing your grandsons journey 🙂 I am so happy for him and the family that he was able to be helped and is on his way to achieve whatever he wants.
I empathize his struggle and that of the family.
What food he eats is also important organic and little sugar no seed oil no prepared food.
I had an hyperactive kid that is how we dealt with it. no soda either. He had eye problems coordination problems and wore special glasses that helped strengthen his eye muscle .
He is the PhD. 🙂 never was much coordinated but then he did not care for sports much neither did we care. He has many other gifts 🙂
I pray for continued healing and growth for your grandson in body mind and spirit.
God bless you and your family
Thank you for your story and reading, singingsoul1. Good to hear your son overcame eye issues. That is encouraging. May the Lord bless you and yours as as well!
The funny thing with the grandson is that he does not like any sweet foods, candies or sodas other than chocolate that they have to monitor. So that part has been easy so far. None of us are much for processed foods. Agree on the seed oils, that’s something to watch. His dad does much of the cooking and uses olive oil most of the time.
TB~ Appreciate the recap. What an incredible path of love, family and healing. It brought tears to my eyes. Yall working together and trusting each other and the Lord has truly given that sweet child a better future that otherwise he wouldn’t have. The one he deserves. It’s nice to read of his triumph over so many hurdles.
Thank you, mollypitcher5. In this insane world we live in people need to know there are good things that can happen if we do what is right in the Lord’s sight. Victory can and will happen. What better way to express it than to tell the story that is under our own roof so to speak?
The longer I live the more I understand that God’s Word is true and faithful.
Everybody talks about our grandson. He truly is a unique light into this world. He embraces everybody and always asks about them and how they are doing first. Which means we will always have to guard this treasure from Satan and evil as he grows up.
Be blessed, my friend.
If it’s not too corny..tell him that he has a mini fan club here. Some people root for little leaguers or other pee wee sports…he’s got fans cheering his awe inspiring go-get-em attitude and each win he gets !
I will do so!
Great news on the progress. Thanks for sharing.
👍
What a journey, thank you for sharing. Makes one wonder how many children slip through the cracks as they say?
I agree, it it the part that bothers me the most. So many lives that never reach their full potential.
Thank you for sharing your heartwarming, educational, and cautionary story! Your grandson is very blessed to have you and other family members watching over him. I pray that he will continue to improve and thrive and that you all will have discernment about what he needs. I’m very sorry for those who are not getting the help they need. They are like lost members of society, and their quality of life is not what it could be.
Future updates will be welcome!
Thank you, TT. And thank you for all of your contributions on this site. You help make it a special place.
We keep praying that we are nearing the end of discovery and fully on the path to recovery and fulfillment of his promise.
Like you, it pulls at our hearts that so many children are not receiving what they need to thrive, just falling through the cracks or being abused. If stories like ours can help even one family and child one day it will have been worth the time to tell it.
Glad that all the perseverance is paying off for others besides your grandson.
Reading all the jargon is how my teacher daughter talks about various students she has and has had. She teaches in a private school, and is gifted at being able to identify and work with various issues that her students deal with. I have not heard her talk about the dyspraxia and vision issues being associated, but I seem to recall she at one time had a student that might have had similar issues.
I’m going to share your story with her, but not link to it because if I do, I’m not sure she would read it. She’s been slow to wake up from the kool aid, but it is slowly happening.
Once she’s fully awake she’ll likely never go back into that sleep coma, at least we can hope. What a blessing that she has you to help gently nudge her into consciousness!
She’s been figuring it out for herself.
Probably the best way, if she’s anything like my kids 🙂
That is exactly what I hoped would happen, jamcooker! Thank you for sharing with me. I am happy to hear your work is beginning to pay dividends.
🙏
Thank you for another encouraging & enlightening update on your precious grandson!
I was wondering if he received any of the typical childhood vaccines? If so it might be worth checking into vax detox strategies that you all would be comfortable with.
I absolutely resonate w/ what you shared regarding IEPs & the extreme difficulty in getting comprehensive & relevant diagnoses for a complex special child.
My own special needs son Josiah had numerous vision issues, some of which may have been related to autism spectrum complexities. It wasn’t until he was out of HS that I discovered that he’d been dealing with Double Vision (V-pattern esotropia, iirc) & he subsequently had surgery on both eyes to at least partially correct this condition. That his entire formal education occurred with this condition impeding his functioning was beyond infuriating to me! I only discovered it by observing him looking up through his eyebrows to watch TV & I thought he was having posture problems but he said it was so he wouldn’t see Two of a character in the show we were watching…& he was 19 then!
He also had “visual (& auditory) processing problems” that were likely also connected to the autism issues. We were told that he would likely benefit from vision therapy, but the doctor who’d done the surgery though willing to allow such an evaluation for my son (he had the condition per the eval) since he “didn’t believe in” such therapy it was never ordered & without the doctor’s order no insurance would cover it. Also Josiah’s long time pediatrician w/ a practice dedicated to complex special needs kids (& their families) apparently had awareness of such vision therapy but also had never ordered it for my son. At the point these things were being discussed he had “graduated” HS & if you think the health care for special needs kids is bad at the pediatric level wait until getting shoved into adult care where there are minimal, if any, treatments for the developmental issues that certain special needs people could still make progress on. It is beyond frustrating!!!
It’s all a Very Broken System! Thankfully the Lord has lead you & your family to knowledge AND providers who are willing to be creative in their approaches with your grandson. In many ways you end up having to be their advocate & case manager and basically never take No for an answer. Only God truly knows what their needs are & He can lead us to the right people, institutions, & insights to better care for their needs.
When in the midst of those intense battles there have been times that I found encouragement & insight in reading the experiences of others, especially from the special needs (grand)parent’s viewpoint. We end up being in a very unique position of having deep motivation, love, & determination to see our kids do well & we (hopefully) don’t take the negative pronouncements of the “experts” too much to heart.
There were times when we had such painful pronouncements made over Josiah: “he’ll never walk, nor talk, never read, nor write”; “he has an unmeasurable IQ, possibly in the 20’s” (later that same neuropsychologist tested J to have low average intelligence but he thought that J’s IQ was higher than that but was hard to test due to the many complicating issues); “you’re a delusional mother that refuses to accept you have a mentally retarded child!”–that one from the Michigan Protection & Advocacy “advocate” who was supposed to assist us w/ our Due Process Hearing Request against our special ed system that adamantly refused to acknowledge Josiah’s diagnosed autism spectrum issues nor even attempt to “appropriately” address them…sigh…
I may have mentioned this to you before but there are many resources available at the WrightsLaw.com website, including “yellow pages” resources for various states.
What a blessing that championing your grandson has lead to solutions for your wife & her sister!!! In my own case trying to “recoup” from special ed battles I ultimately ended up pursuing blogging as an outlet for the overwhelming frustrations that had no where else to go, which lead me eventually to CTH & then to the Q-Tree!
There is a place where you can share links to these writings about health & your grandson for the special needs community & I wrote about that here:
https://specialconnections.wordpress.com/2018/09/05/it-actually-worked/
This one goes into the overlap of ADHD & autism, as you’ve mentioned the presumably false ADHD diagnosis a couple times. Perhaps ADHD is the lazy man’s catchall label:
https://specialconnections.wordpress.com/2016/10/11/commenting-on-autism-its-different-in-girls-so-is-adhd/
I articulated much of what went into an annual physical for Josiah, & even with all those details addressed there were still likely many things that did Not get attention. In some ways for these very complex kids & situations it kinda does take a village 😉 to cover all (or at least many) of the bases!
https://specialconnections.wordpress.com/2016/02/16/anatomy-of-a-medicaid-physical/
Oh & for your grandson’s further IEP needs if they haven’t addressed “assistive technology” that should really be looked into. There are low tech things like raised line paper & pencil grips or larger pencils that can help with the handwriting. Josiah used to get “hand over hand” OT therapy to teach him certain motions that his processing challenges made difficult for him. My son’s writing at age 27 still looks like a grade-schooler’s but if you see what he writes/types he is not thinking (too often) like a little kid!
I tried to find Josiah on twitter but don’t know his account name, but here is a recent blog post where he cries out to the Lord in the midst of struggles:
https://josiahsfreakshow.wordpress.com/2023/02/07/praising-god-in-the-midst-of-mental-health-struggles/
God Bless YOU & your precious family, Trade Bait! ❤
Thanks for sharing, Valerie. Yes – vaccines were apart of his childhood health program. It was before we all knew what we know now. Daughter has put a halt to anymore. She is all over the medical side now. I have no doubts they negatively impacted this grandson.
Thank you for the helpful links which I will read through today and refer on the applicable ones to daughter. Thank you for sharing your family and Josiah’s journey – it matters greatly!
We have worked the various pencil methods and OT is helping. We are learning it was the vision issues that were a major cause of it. I will post this in the opener today, but he discovered the true look and feel of his hands for the first time yesterday when he put on his new glasses. He was amazed, kept looking and touching his fingers.
Daughter tested his peripheral vision a couple of hours later. He had none before. He can now tell you the number of fingers you are showing from sides like a normal visioned person. He is all amazed and so happy about it all. The therapy starts in two weeks. The other issue he has endured is that one eye or the other would dominate in the limited field of vision he had. The non-dominant would simply not contribute at all. The therapy and glasses will also correct that so both work together at the same time.
It will be a time of great discovery and personal advancement. I lay this blessing down at the Lord’s feet and pray that he will use this special little guy for the good of the Kingdom. To Him all praise and glory!
🙏 for you and yours always. May the Lord richly bless your lives.
This is all such wonderful news, well not the vax’s so much. He is on such an amazing journey of discovery & restoration!!! God is so good to continue leading you all to the places & people that are helping to unlock his precious potential. Blessings!