I’d like to write a bit on the topic of disappointment, because disappointment is affecting me this week.
To be honest, disappointment is always affecting me, to some degree. When we started recovering Martin, more than five years ago(!), I thought we’d be done by kindergarten. The mother who launched our biomed journey put that notion into my head, I suppose, because she’d recovered her own son in less than three years. Martin is in second grade now, and if you read this blog, you know that he’s not recovered yet. That disappointments me, chronically.
The fact that the pace of Martin’s recovery disappointments me—that compounds the issue, because I feel disappointed in myself. Think about the son I have today: conversant, joking, getting-healthy, almost-non-stimming, diagnosed ADHD/language delay. Compare him with the constantly stimming, perseveration-stuck, limited-speech son I used to have, diagnosed ASD. What kind of person am I, to let disappointment enter my thoughts?
v.tr.
1. To fail to satisfy the hope, desire, or expectation of.
2. To frustrate or thwart.
v. intr.
To cause disappointment.
We are hoping to transfer Martin from his self-contained special-education school to a general-education classroom with an aide. The neurodevelopmental psychiatrist (mainstream) says that Martin is ready. The behaviorist says that Martin could make the leap. Martin’s Sunday-school teacher, who has charge of him along with a dozen typically developing kids one morning per week (and who herself has a son fully recovered from autism), has advocated for general education. Adrian and I, when we see Martin at his best, know that he has outgrown his special-education placement and needs the challenge of general education.
Our zoned elementary school, at Martin’s grade level, has 26-to-28 pupils per class. Even with an aide, that’s too many. Instead, we’ve been combing the local private schools, which average 12-to-15 pupils per class. I’ve met with the admissions directors of more than half a dozen private schools, explaining that we want to transition our son, and that he would likely need assistance, including a classroom aide, for another year or two. One school told me to get lost: They had no provisions to help a child transition to general education, and were not interested in stretching their parameters. Several schools said they had a resource room and/or a special-education teacher on staff and could offer accommodations but would not consider a classroom aide. Two schools, both church-affiliated, said that if Martin was otherwise a good fit, they would consider allowing a classroom aide. One of those two schools currently has two students with classroom aides, and its headmaster is a former special-education teacher. That school soon became my, and Adrian’s, top choice for Martin. When the school agreed to have Martin visit for a day, last week, we were hopeful.
As I wrote above, when we see Martin at his best, Adrian and I know that he has outgrown his special-education placement and needs the challenge of general education. Regrettably, Martin is not always at his best, and for the past month or so, he’s been sensory-seeking, with a diminished attention span. (A limited attention span—an infinitesimal attention span—remains Martin’s greatest challenge. Diminish that? Argh. Martin? Martin? Hello, Martin?) When he visited our top-choice private school last week, Martin was not at his best.
The school promptly turned us down.
What a disappointment.
Disappointment, because although the other church-affiliated school remains in play, our plan to move Martin to general education may be delayed another year. Disappointment, because the school we thought would want our son rejected him. Disappointment, because biomedical recovery is still a fringe movement, so I cannot tell the school, “Two steps forward and one step back. It gets worse before it gets better. The antimicrobials he’s taking for Lyme disease have kicked up a lot. Wait a month or two. He will be a whole different kid.”
The sting of rejection is still fresh, and today Martin’s annual review arrived from his current school. If you have a child with an IEP, you know that annual reviews, and progress reports, and IEP’s themselves, are not drafted to highlight a child’s strengths. They are drafted to justify maintaining services. Martin’s annual review is no exception. He has trouble sitting in his chair properly. He sometimes calls out inappropriately during lessons. (Detoxing. Ever hear of detoxing?) He reacts poorly when he doesn’t earn all his behavior-management tokens. He can’t focus. He needs prompting. He is making progress, but he isn’t ready to leave his supportive setting.
When I was a child, my family had a Magnavox Odyssey2 video game console. (Showing my age with that admission.) I remember a game that scrambled words. I just searched online but found no record of this game. (If you, dear reader, happen to be an Odyssey2 whiz, or just skilled at finding ancient relics online, please email me at FindingMyKid@yahoo.com, or comment on this post, with some evidence that this word game existed.) I loved the Odyssey2 word game. I challenged myself to find words too long to fit on the screen.
I remember distinctly: The longest word my pre-teen mind could conjure was DISAPPOINTMENTS.
Fifteen letters, DISAPPOINTMENTS. Many months passed before I found a better word than DISAPPOINTMENTS.
Today, here, now, I challenge myself to find a better word than “disappointment.”
I challenge myself to find a better emotion than disappointment.
Martin, next to a good friend of mine, checks out the Long Island Sound.
Finding My Kid 
I so understand how you feel!!! It’s as if you are running a marathon and you are fixated on the 26 mile mark and you can handle that, but then towards the finish line (you thought you were done) you realise you have another half marathon to go. At first you break down thinking you don’t have the will power, but just as you think you are at your limit your child takes a step forward and you realise you can go on.
Thank you for your blog, its so helpful to see the honesty of your posts. We are also getting there slowly, its always 3 steps forward and 2 steps back, but all those 1 steps add up over TIME. Just the other day I thought we are almost there, and then when we go to the park with a few of his classmates and I realise how fast and quick they speak, how more fluid they run. The problem is although we have made great progress in the last months, the neuro-typical kids are making even faster progress and so the gap is not narrowing….
Your recent comments on Lyme have reached out to me. I believe everyone in my family has it, that my kids inherited it, but we have it contained, our immune system keeps it at bay. With my son this made him more susceptible to ASD. We did the Cowden protocol for a time (Banderol, Cumanda etc). Recently we have seen the best results in our son on a new protocol which I avoided for a long time as its a paradigm shift from the Biomed we were following. Biomed got us to mainstream school but still, school doesn’t come as easy as it should. I’d say we are at the ADHD with language and motor skills delay. This protocol has been so effective as it is gently but blanket hitting ALL pathogens including Yeast, Lyme, Parasites, Virus and Bacteria. Particularly the parasites, never tracked it before but the worst behaviour comes at the time of the full moon before. In the past 3 months I have confirmed the pattern (the December full moon was around Dec 25th…). The step back often happens before the full moon. Life is calmer now, but previously on pure Biomed I felt like I was playing that game at the fair, where you have a hammer and you hit the one mouse that pops up and immediately another one pops up and then another etc. Since the start of this protocol, the yeast is contained, no longer need to fall asleep sitting up due to congestion. We are doing parts of the protocol, particularly the parasite protocol from the book ‘Healing the Symptoms Known as Autism’. For the first time I have seen blanket progress, in all areas. The book is definately worth a read with an open mind. I have/had mild arthritis in my hands for years, which a naturopath diagnosed as being Riketsia/Lyme located there. I first tried this protocol on myself and within two weeks no pain in my hands. Many Lyme sufferers have tackled their lyme issues on this protocol.
In the meantime we keep running the marathon, or two, or three.
Hi, and thank you for reading my blog and commenting. I am very familiar with Healing the Symptoms Known as Autism and the protocol that Kerri Rivera advocates. I’m so glad you are having positive results with your son. I have reviewed and re-reviewed CD/MMR over the past few years and determined that it isn’t right for out family. My thinking is fourfold. First, I worry about the long-term effects of chlorine dioxide. I rely on the Autism Research Institute, in which my son’s doctor is a participant. ARI issued a statement warning against the potential damages of CD (http://www.autism.com/statement_mms). Second, many facets of the protocol require the use of enemas. I am not willing to do that to Martin. I think it would be too violative of his body integrity. Third, I’ve watched videos of children that Rivera claims to have recovered through the use of CD/MMR, and the children don’t always look recovered to me. They seem to retain challenges similar to what Martin has now. Fourth—and this is admittedly very personal—I have attended talks by Rivera, and she wears what appears to be a lab coat or doctor’s uniform. I am suspicious of anyone giving the impression of being a doctor when she is not! That all being said, I recognize that different families find success with different treatments, and as I said up front, I am nothing but happy that CD/MMR is helping your son. Please keep in touch and let me know when you finish the marathon, or the second, or the third. I will try to meet you at the finish line.
Cyrpto-Logic?
What does this mean?
Pingback: He Doesn’t Seem to Know | Finding My Kid