I love the internet and the communities we create with one another. One of my favorite moms —and a thoughtful, thought provoking blogger —emailed me tonight. Her radar must have been up because she asked how I was. Nothing unusual about that, right? I dunno, call it weird vibes but I thought I could sense “you’ve been kind of quiet, are you ok?” behind the question.
I’ve been wrestling with a situation —it’s not a problem, but it is something which requires resolution —and it’s been my own personal Deatheater all weekend long, just sucking the life and soul out of me. I’ve been thinking all day long about what I wanted to write tonight. My response to her email follows:
“We’re…ok…sort of. Long story short– we have a chance to fight
to take Nik out of school but it requires building a pretty significant
case to convince Medicaid that they should pay for Nik’s therapies
and stuff. I’ve spent the better part of the last 4 days combing through
records and drafting “talking points” for a conversation with the case
manager. I’m angry that I even have to do this. I’m depressed to see
the realities of Nik’s *minimal* progress over the course of the last
calendar year. And I am concerned at the concrete evidence that Nik
is also far more susceptible to illness than I had perceived.
BTW, don’t be surprised if you read some of these very same words on my blog later…I’ve been wrestling with a post about this issue. In light of how all consuming it feels, I’d say it’s appropriate. Plus, Nik’s IEP is Friday.
Plus…Nik fell again Friday and hit his head really hard. More seizures in the hour
following. He’s been falling more lately and hitting his head.
Tonight he pitched face-first onto the hard floor. Nice goose egg on the
left side to match the cut he got at school this morning on the right…”
So, I guess you could say my plate feels a tad overloaded and I’ve had my fill and then some! Lori at Spinning Yellow has a post up today about looking at her life in terms of time looking backward and time looking forward. That’s kind of what I’ve been doing all weekend long with respect to Nik’s life as it relates to medicine and education. Here is some of what I discovered:
In a full calendar year, Nik made nominal progress in OT and PT skills —as indicated by three assessments done over the course of the year (school intake last July, outside professionals in Feb, and his current private therapists this July). Over that time, he made roughly a three month gain; he had been making more significant progress with individualized services through early intervention.
Speech is even uglier…
Based on where he was when he started school, Nik has actually regressed to the functional communication of a 6 month old —courtesy, in my opinion, of the utter lack of stability in our school’s SLP staffing. Nik’s first speech therapist met him evaluated him, and left two weeks later. The next one lasted the school year but did very little. We spent a lot of time addressing the feeding issues —which it took Medicaid to tell me “Oh, no, schools don’t handle that stuff at all,” before we realized we had wasted an entire year for nothing. The actual communication issues? Not a whole lot of progress. But — and forgive me if I sound bitter here — it’s awfully damn tough to make any progress when you spend roughly fifteen minutes a week with a child. Even that wasn’t always one on one. How do I know, you ask? I requested the records from the SLP before she left school last Friday. Yeah, the revolving door of speech therapists strikes again.
So, let me put it this way —all things remaining the same as they were over the past school year, at his current rate of progress, my now nearly four year old will be functioning at the level of a two year old by the time he starts first grade. Now, I know there are many, many children for whom this would be remarkable progress. I also know that Nik started life with the deck stacked not exactly in his favor. But my son is so smart and keenly analytical. He’s the kid who mapped out how to get out of his crib without ever actually making practice attempts first. The kid who can watch me work a deadbolt a few times and then figure out how it works —again, on his first attempt. He is also the same kid who makes remarkable, steady progress when he is given the right level of services.
Bear in mind, this is all based on testing and evaluations up to —but not including— the arrival of Miss D and Miss T into our lives this July. Since then…nothing but progress and rapid gains, baby! Makes sense since he’s all of a sudden receiving roughly four times the amount of therapy he got all last school year.
I forgot to mention, all of this mayhem is the result of a great conversation with a very savvy advocate —the same one who is coming to the IEP on Friday! It is at her urging that I embarked upon this tedious and frustrating (albeit highly edifying) endeavor which I hope will pay huge dividends! Maybe that’s why it has been so difficult for me? Not so much compiling the evidence of things I already know, but the need to paint a picture of my son in such a light that we have a shot at prevailing in our quest. I am leery of getting my hopes up again only to be dashed upon the rocks once and for all.
So, this conversation with the case manager has not yet taken place; I wanted to make sure I had all my “ducks” in a row. I need to present a compelling argument to convince her that it is not only in Nik’s best interest for us to take him out of school, but that it is also a sound financial decision for Medicaid. I’ve compiled charts of data, lists of arguments, evidence to support the evidence. You name it.
I guess I can’t say it’s all been bad; I mean I did have a realization about Nik’s health which had not been so clear to me before.
Since I’ve been mired in depressing health statistics today I will share them with you. Lucky you! In the past 15 months —which is the time frame since he began school at the age of two and a half —Nik has:
— missed 32 days of school (more than 6 weeks). Of that time, more than 70% has been due to illness, including a week-long stay in the hospital in January.
— been on antibiotics 14 times in 15 months.
— lost an average of two hours sleep for every school day because we have to wake him early enough to get his tube feeding in to fit the school schedule.
— lost and gained and lost roughly the same three pounds —right now he’s holding steady.
— been diagnosed with an immune deficiency and now needs to be on antibiotics every time he is ill so he can fight off any secondary infection. The constant use of antibiotics puts Nik at significantly increased risk of developing resistance to the few drugs he can take; he is allergic to all “-cillin” drugs (Penicillin, Amoxicillin, 4 generations of cephalosporin drugs, etc.).
In addition to all that, there are numerous developmental reasons why school is not right for Nik at this point. Nik requires significant one on one attention and direction simply to engage him in a desired activity. He also requires highly focused, individualized attention to practice and retain new and emerging skills.
To date, despite numerous conversations about the need to do so, there has not been any effort made by school to address Nik’s perseverative behaviors —specifically doors and drawers. Nik doesn’t respond to a simple reprimand/rebuke. He needs active redirection until he has the cognition to understand either it is not something to play with or that he may do so as a “reward” for doing “x.” There is not a consistent manner established at school to address this “interfering” behavior. Their word choice.
It is becoming clearer and clearer to us that Nik is unable to process the bombardment of sensory input he receives during the school day. He does significantly better in a quieter, smaller environment. He does have moments of shining splendor during the school day but by the time he comes home from school, Nik is so dysregulated that he cannot function. He cannot make eye contact, he cannot sit still, he does not respond to attempts to engage him in anything; he simply likes to play on his own and on his own terms. This usually involves a lot of throwing toys and laughing maniacally! By dinner time, Nik is so exhausted from the day that he cannot pull himself together to function without the risk of injury (like tonight’s “facer”). Often, he is nearly passed out from exhaustion before his dinner is even finished.
Then, too, we have concerns about Nik’s physical safety at school during his period of being a “new walker” combined with his visual deficits. Of particular concern is his depth perception in an environment that is visually very flat and composed of cinder blocks and hard tile floors, lots of counter tops at eye height, etc. Nik has already had two episodes in two weeks of falling and hitting his head hard enough to cause clusters of increased and changed seizure activity immediately following. There is talk of trying a soft helmet but we have very strong doubts that Nik will comply due to sensory issues he has with things on his head. School is the only place Nik has this problem with any consistency.
As I re-read what I have written, I can understand my mood of late. It’s not that I don’t have the greatest of hopes for Nikolas —I absolutely do! It just frustrates me to no end to realize how much harder he —and we —have to work just to provide opportunities for him to make the progress he is capable of making. It galls me that we as a nation spend so damned much time, energy and money on a war we didn’t ask for and have nothing left to nurture and educate our greatest resources of all. And it makes me sad that I have to paint a less-than-flattering (though wholly accurate) picture of my son in order to help him.
Wish me luck, I think I’ll be talking to that case manager soon.