Johnathan, our gift

It seems that the biggest obstacles we have faced with Johnathan are those that are beyond our control. Doctors, insurance companies, school districts, those are the ones that truly make life hard for Johnathan.

Johnathan started school two years ago. He is a registered 4th grader, but is placed in a preschool setting. I have worked hard at getting my son a voice, but have found that the schools not only don’t know how to use the devices, but also don’t seem to want to learn.  I think they feel they are the professionals, so they are allowed to treat my son like he’s stupid. I find it hard to believe that I am the only parent within this big school district that works with telecommunications.  But yet no one knows how to use the device we have found Johnathan able to implement, and under IDEA laws, no one has to be trained in the ways Johnathan needs to learn. One must enter the world of a special needs child in order to truly see thier potential. You would think teachers and therapists within their schools would already know this and be willing to do whatever is necessary to see them strive. Sadly they do not, are not, and do not have to be.

Beyond that, schools need the doctor’s scripts for therapy, but don’t even have to do any more than pretend they considered their advice about the health of the child’s immunity from a doctor’s letter. This was even more appalling to me than the games and lies they are legally allowed to play. Yes, they must hand us a book of by-laws, but no where in there does it state that they can come into your home, make an agreement with you, then walk out the door, and amend that plan, by simply changing their mind and calling to tell you they did. This is what the director of special education in my district did to my son. I didn’t know they were paid to lie to parents; but apparently this was spelled out in the by-laws somewhere. Beyond that, I recently learned that since my sons IEP did not spell out the amount of nutrition my son needed, that they are not responsible for listenign to what I tell them he needs, and in turn, not liable for not giving him the amount of nutrition he needs while at school.  Or, the other big issue, they have no one trained in the voice box my son needs. Since they took a couple classes the school calls them trained and states they did what was necessary. I state that you ain't getting my speech script if you refuse to offer the kind of proficiently trained speech pathologist necessary for my son to progress. This school ahs nothing to offer my son, but yet they seem to think they do. I need their permission to go to another school, but since they feel they can educate my son, they refuse. They said he is in life skills cause that is what he needs. I say he is in school for an education. Because they say they know my child, and someone gave them the power to act as if they know best, my son is not getting educated, but sent to a daycare that offers generic therapies.

Then there’s the doctors and hospitals, they are professionals and demand respect because of it. They earn my respect by being honest. When one isn’t sure of  something, they should say so, not give  big ”run around” words that truly mean nothing. I had some clinics in a hospital say my son had a demyelination, and he would die young, while others, within the same hospital said he had a dysmyelination and had no time line of life. I asked them all to come together and get this straight, but found that was not something they could do. Doctors within the same hospital can not work together to come up with a proper diagnosis of a child! I had to send all my sons info to another state to get the answer; he was not going to die young.

After my sons 1^st seizure type episode. We came to the hospital by ambulance, but since our vitals were fine when we got there, we were told to take a seat in the waiting room and await our turn. Are you joking? My son doesn’t have seizures. This is a first, not to mention very scary. I left. I took my son upstairs and had his baclofen pump checked for errors, when none were found, I went home.  Later, I requested to see a neurologist we had seen years earlier, but was told he wasn’t working well with others and that I could see another doc. Since it is important, I am a parent of a child that just started having seizures, I need answers, explanations, so I obliged. The neuro told us to call him next time a seizure occurred, not 911, and that nothing else needed to happen at this time. Next time, I called the number I was given. I got a machine, then another, then his wife, which returned me to another machine. I wasted the entire time in machines, instead of with my son. After filing a complaint with patient advocacy, I was given an app with the department head.  At 1^st, I thought this doc was taking the time to look over my sons chart before the appointment, and going to take the time to discuss things with me. But when he was unable to pull something up on the computer, he left the room, returning with his secretary. The appointment then turned to me leaving completely disgusted and in shock over what happened. I asked what options we had, neuro stated medications and started listing some, and I said no drugs. The secretary asked what I was doing there then, what I wanted. Flabbergasted, but still attentative, I turned to hear what the neuro was saying to my husband, only to hear him giving examples on how nothing stops seizures, including the fact that I could pray for the seizure to end, by the end of the prayer the seizure might be over, but that it had nothing to do with the prayer. End of appointment. Need I say more? I no longer call 911, or schedule any apps with Children’s Mercy Neurology Clinic. I will try Columbiaor St. Louis. Our orthopedic and rehab docs are already there. No good doctor stays at Children’s Mercy very long. I realize this is a ridiculous world we live in, but I am not one of those that make it that way and refuse to be treated as such. And, after 1 1/2 years of sizure like activity, demanding tests, instead of settling for assumptions, we learned that our sons baclofen pump hosing had a hole in it. We do not have siezures, we had a medication drug overdosing thru our gut. One and a half years; crazy.

That brings me to insurance. We use to have UHC as a primary, and straight MO Medicaid as a secondary. MO Medicaid has truly been good to us, but private insurance is a joke. I started in October 2006 with UHC. I have therapists that still have not been paid. And the billing process is even worse. I have had to wait days to get scripts, for they say things aren’t done right. Then, when we finally get things done, we try billing that same way next time, and we are told, again, that it is wrong. Right now, my son got a higher dose of prevacid in a new script. We need 15mg solutab Prevacid twice a day, but can’t have it because UHC only pays for 31 tablets in a 30 day period. But, since they are not refusing payment, but the quantity, Medicaid can’t pick up the rest. So, the 30 mg solutab, that made my son choke, that can’t be crushed, or cut, is all they will pay for. I have to snail mail a letter and await a decision on whether or not they will abide by the script ordered by the doctor for the safety of the child. Somebody better be joking on this one! No, this is what I had to await the answer for almost a month, with no one but my son suffering for their ignorance. We no longer have private health insurance and gladly stay broke enough to stay on straight medicaid, so that our son never has to go without again.

Then there’s natural vs. drugs. Drug companies and hospitals/docs are all together apparently, for you can’t get one without the other any more. But yet all natural, healthy is what we see on about every commercial today. So, on one hand, they say get natural, get healthy, but on the other hand they refuse to help us get real, so we may get healthy. I know a 14 year old girl with a script for Zanax. She got it after her mother caught her stealing hers and realized they could both have more if the mother taught the daughter how to “Wah-Wah” and get her own. I know another mother that has a few scripts of her own, that take the place of the street drugs when she ain’t got the cash to get them. IT’S ALL ADDICTION. How many other scripts, and facilities are doing the same. I have seen the effects of street drugs and prescribed drugs. I see no difference, EXCEPT those hooked to the prescribed drugs have no problem because the doctor said. Our world needs reality, not drugs. I have been sober 10 years now. I know what I am talking about here. Life sucks for most today. Drugs only cloud ones perception of what life is, and truly make it suck even more for longer periods of time.

I have done 187 hyperbaric oxygen treatments with Johnathan. Johnathan quit aspirating after the 1^st 40 treatments, that was 6 years ago, and he still has never aspirated. He was severely far sighted, but by the end of 120, we have never needed glasses. It also relaxed his tone tremendously, something that even his baclofen pump has a hard time doing. But yet, because no controlled study can truly be performed, this is still considered controversial treatments, and not available to most unless they come up with the $150.00 per treatment themselves. It has been doing wonders for years on brain injuries. I have seen a girl from a car accident that became in a vegetative state start walking and talking again. I have seen a stroke victim regain her fine motor skills. I have seen the benefits of this non-evasive treatment. I know my son would not have needed the tendon releases in his arms and legs if he was able to get the HBOT on a regular basis. I believe we would not be having this new seizure activity if he was receiving HBOT on a regular basis. WHY WILL NO DOCTORS OR HOSPITALS ALLOW OUR CHILDREN TO HAVE MORE THAN DRUGS AS THEIR OPTIONS OF CARE? Beyond HBOT, I have also seen wonderful things with natural oils, vitamin regimens, gluten-casein free diets; there are numerous natural ways that do work. They may not work for everyone the same way, but they have been proven to work long enough. WAKE UP ALREADY!