Archive for the ‘immunodeficiency’ Category

And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I’ve never done before.

Help me if you can, I’m feeling down
And I do appreciate you being around.
Help me get my feet back on the ground,
Won’t you please, please help me?

John Lennon/Paul McCartney

There are days when I feel so utterly lost and helpless for what to do about Nik’s ongoing health challenges. I’m not talking about the daily routine of tube feedings and medications, the seizures, or the weekly trips to a plethora of therapies —PT, OT, Speech, Feeding, and the multitude of doctors appointments. No, those are pretty much second nature after all this time.

Days like today, after nights of interrupted or nearly nonexistent sleep like last night (and the night before, and the night before that, and the night before that…) —when Nik is especially quixotic, going from happy to distressed and back again in mere seconds — these are the hardest for me to bear. When Nik is in the throes of battle with his mystery ailment —which seems to be continuously morphing with each day, adding or changing symptoms — that is when I am at my nadir. I am exhausted and anxious, worried, frustrated, and confused. I have been so grateful thus far that Nik truly doesn’t seem to have any self-injurious behaviors except when he is ill or in pain. But lately that’s been a constant.

When it begins, I don’t know what to do to help him. He’s still small enough that I can try to hold him and comfort him through the worst of it. At the very least, I am able to provide an environment where he cannot do too much harm to himself as he thrashes and writhes, kicks, and pounds his head against the floor. The floor is the one I have the most trouble with; it is a laminate floor over concrete slab. I am so worried that Nik will give himself a serious concussion. He already has a permanent lump on the side of his forehead from hitting it against the side of his crib at night and a new bruise has appeared on his cheekbone —about the width of the space between two slats. Whatever is causing the pain seems to respond to Advil but the kid can’t live on the stuff forever! And the doctors, so far, are no help at all.

Days like today are utterly exhausting to me; I cannot imagine what they must feel like to Nik. A string of days such as we’ve had lately with Nik’s fever, rash, cough, etcetera leaves me feeling antsy, gloomy and short tempered with the entire world. I need to get out for something more than a quick trip to the grocery store or the gym. Niksdad, bless his heart, is so busy with nursing school all week and working every weekend that even when he’s home he’s spent, too. And he helps where and when he can, he really, really does.

Respite isn’t an option at this point because of Nik’s medical needs; they are great enough to require skilled nursing care because of his g-tube and seizures yet there is such a shortage of home health workers that we cannot find someone willing to work just a few hours a day, a few days a week. On the other hand, they are not so great that he qualifies for home nursing care through his insurance. And because of Nik’s autism we are reluctant to leave him in the care of just anyone. Obviously, when Nik is not sick I can take him out with me but even that’s been quite a while; he’s been sick off and on for seven weeks now —the worst being the past ten days.

So, what do you do when you’ve reached your breaking point and there is no relief in sight? When you are at the end of your rope and listening to sad or emotional music so you can cry tears of release? When you can’t stay in the same room as your own child for very long because you just don’t have the energy or patience to handle their behavior or to engage, stimulate, or redirect? When you feel like a bad parent but you know it’s the devil of sleep deprivation and anxiety talking in your ear? What do you do?

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Or is that Day — The new night?

Who knew?! Apparently nighttime is no longer for sleeping. I guess that’s just an old, out-dated notion that only fuddy-duddy folks like us parents ascribe too, right?

In other words, “Yes, Virginia, there is such a thing as sleep deprivation torture.” And my son is acheiving rapid mastery of the techniques, I gotta tell you. Up from 10 to 12:30 last night, again from 1:30 to 3:00 a.m. this morning. Awake at 6:30.

Not the pleasant, “Golly it’s the middle of the night, isn’t this a swell time for fun and games” awakening. Nah. More in the “OHMYGODMOMMYMOMMYMOMMYPLEASEWAKEUPRIGHTTHISVERYMINUTE
kind of way. Worked like a charm on this mother.

Ok, in the kid’s defense —because that’s what any good mother does after a night of intensive sleep deprivation does, right? —he’s still feeling really crummy. Feverish off and on, even with the overlapping of both Tylenol and Advil, and —I’m guessing —achey with a sore throat. The general cruds. His longest stretch of sleep last night —and therefore mine, as well —was a whopping 2.5 hours.

Six-thirty this morning and the fever and rash were back. This mysterious rash seems to come and go as the fever escalates. I’ve heard that this happens but we’ve never experienced it with Nik before. It’s a tad disconcerting to watch the red splotches creep up his leg in front of my eyes, only to disappear just as quickly as soon as I pick up the phone to call the doctor. (Do you think the rash can hear me dialing? Could it possibly recognize the number??)

Poor little guy (um, that would be Nik, not the rash). Obviously he hasn’t learned the trick for staying awake after conducting his maternal torture sessions. I brought him downstairs, changed his diaper and gave him Tylenol (Advil plus empty stomach equals tummy ache). He was singing happily on the sofa.

In the time it took me to walk ten feet into the kitchen and start to prepare the pump for his breakfast, he fell silent. When I turned to check on him? Out cold.

Four and a half hours.

We are going to the pediatrician again this afternoon —with photos of the rash. Let’s see, I think this makes six trips in seven weeks, not counting the two round trips to the hospital this weekend. But really, who’s counting??

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Lessons learned today:

Mother is always right. Nik is sick —even if no one can figure out what the hell he has.

103.4 degrees Fahrenheit pressed against my body in the form of hot, writhing toddler makes me sweat.

Apparently, the temperature at which my child merely slows down but does not stop is 103.4.

Time stands still when you are taking your sick child to the doctor an hour from home.

The moon is still setting in the morning sky at ten o’clock. It is beautiful and peaceful —and soothing —when you are driving to the doctor an hour away from home in the reverse chronosphere. (Ok, I made that word up, so sue me. But it fits!)

Nik takes after his Mom, not his Dad; Tylenol does diddly for his fever. Advil, however, rocks. After an hour and change on Tylenol, his fever was only down to 102.8. An hour later, back up to 103.1 and climbing.

After an hour on Advil? 100.7

“Rapid” strep tests can still be run even if they are dropped on the floor. Apparently, strep is such a unique bacteria that it will still show in the test.

Nik does not have strep. Nor does he have another ear infection.

He does have another prescription for antibiotics —“just in case.”

Grandparents are angels in disguise. Especially when they run errands to the pharmacy.

Multiple times in the same day.

Pharmacists make mistakes.

Smart parents know how to read and understand the dosage instructions on the prescriptions before they get filled.

Some parents are just lucky, not smart, and read the prescription on the drive home. Other times they are clueless.

Grandparents are angels unmasked. See above reference to pharmacy.

A peaceful child napping comfortably is balm to a tired mother’s aching heart.

The sun shines after rain and life goes on.

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You can do it, all you need is a hand.
We can do it, Mama is gonna see to it!
Curtain up! Light the lights!
We got nothing to hit but the heights!
I can tell, wait and see.
There’s the bell! Follow me!
And nothing’s gonna stop us ’til we’re through!
Honey, everything’s coming up roses and daffodils!
Everything’s coming up sunshine and Santa Claus!
Everything’s gonna be bright lights and lollipops!
Everything’s coming up roses for me and for you!

(“Everything’s Coming up Roses” from GYPSY)

Woo Hoo! Time for a happy post and a happy dance!

As you know, I’ve been in that nasty ol’ rabbit hole lately and trying my darnedest to claw my way out. Of course, all the cyber ice cream probably didn’t help! Just makes my butt bigger…but I digress from the H A P P I N E S S I want to share with you all.

We had our appointment with the immunologist today; I’ve been really worried about this one since Nik’s been so sick for the last year and it doesn’t seem to be improving. Both Niksdad and I have been imagining the worst-case scenarios; it’s not a difficult leap to make for either of us, given what we have been through since Nik was born. Well, the doctor gave us some wonderful news today —Nik’s immune system has done significant catching up! While his immunoglobulin levels are still slightly low, they are at least I the normal range for his age group.

This is very good news, indeed. It means Nik’s immune system has been developing the proper antibodies in response to illnesses and from the booster shots he’s received. In fact, the doctor said he didn’t think we needed to worry about having Nik around lots of kids (as in a school/daycare setting) anymore. He thinks that Nik may have been so ill this past year because it was Nik’s first full-scale exposure to lots of stuff —ever.

Until Nik made it safely through his first two winters at home, we had to be super-cautious about exposing him to illnesses which could cause major respiratory setbacks. Since Nik’s first winter was spent in the NICU, his first real exposure wasn’t until the spring of 2006. He started school in June 2006 and has been sick off and on ever since. Most likely, he simply hadn’t had the time most toddlers have to build up antibodies before getting bombarded in a school setting. (Hmm, yet another affirmation of our decision to remove Nik from school this year; he’ll have a chance to develop greater immunity at a more normal pace.)

There’s a bonus. Not only is this good news from a health perspective; it means that Medicaid cannot force us to use the letter of medical necessity from the pediatrician which states that Nik shouldn’t be in school due to concerns about his health. The issue has become moot. “Why is this good news,” you may wonder? Well…

It means we can proceed with our plan to cut school out of the picture entirely and not have to worry about Medicaid trying to force them back into it. That would just be a legal quagmire at this point and we are not prepared to go there; we’d much prefer to spend our time and energy living our already too full life and working with Nik —playing, teaching, encouraging in the ways we know he thrives. Plus, with Niksdad in the clinical phase of his nursing school experience, I’d pretty much have to shoulder the burden of preparing for a legal fight all on my own. Um, no thanks.

But wait, there’s more! (“Yes, if you act right now, you’ll get this amazing set of Ginsu knives free…”) While I was out getting my shaggy mane cut, colored, fluffed and puffed this afternoon, Niksdad called the case manager at Medicaid to tell her about the immunologist’s report. We felt we had to be fair so she didn’t waste time trying to work an angle that would only lead to heartache for her. OK, that and the fact that we would be opening ourselves up to a potential charge of fraud (by the school district) if we proceeded to present the letter of medical necessity to school —thereby forcing them into providing services —and withheld the knowledge we gained this morning.

As you might imagine, Miss Case Manager wasn’t thrilled about it but she certainly understood. She’s actually a very lovely person and also a mother of two small boys so she completely understood the relief we felt; she also appreciated the medical expenses that were neatly avoided in Nik’s not having some sort of autoimmune disease! Miss C.M. has assured me all along that Nik’s best interests were being considered and that he would indeed be taken care of; I was afraid to trust her.

Today, I humbly admit I was wrong.

Apparently, this week while I was wallowing in the rabbit hole (well, it was dark and cozy down there), Miss C.M. was diligently following up with her supervisor, their compliance department, and the state director of Medicaid this week. They all agreed to authorize services for Nik in all areas —PT, OT, Speech, and Feeding therapies —for another TWELVE WEEKS, once per week in each area through the end of January. When Niksdad told me this, I cried tears of relief and joy.

I then promptly called Miss C.M. to thank her profusely. See, piss me off or —worse —screw with my kid and you’re on my black list; it will come back to bite you some day. Take good care of those I care about? You have my sincere gratitude and willingness to make sure you are recognized for your good deeds. Miss C.M. told me that once the therapists are nearing the end of the twelve weeks, they just need to submit for more authorizations; she said it most likely wouldn’t be a problem to extend them. Whew! Miss C.M. earned her place in my heart today.

While the 30 minute sessions per week aren’t necessarily as much as I think Nik could really benefit from, it is significantly more than he would be getting through school. I also know that I will attend and participate in each session and learn what to do at home. The value of the carry-over at home is significant; it is not something we ever got from school in spite of our asking numerous times. Besides which, I can now stack appointments on just a couple of days a week, leaving time available to do things like go to the park to meet Mom2Rebels, drive north to meet Irene, take Nik to the zoo, go swimming, take a music class, play in the leaves outside, nap on the floor of Nik’s room —whatever our hearts, mine and Nik’s together, desire.

Tonight, I feel like a tremendous weight has been lifted from my heart. I am filled with hope and joyful anticipation again. There are still hills to climb and unknown challenges ahead, I know. But for now the road ahead looks clear and smooth and I see a glimmer of a rainbow in the distance.

Image Courtesy of WallpaperDave.com

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You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless, like you’ve lost your fight…

Rascal Flatts

It’s been a rough go lately. Between Nik’s lingering non-specific illness, sleepless nights, Niksdad’s demanding nursing school and clinical practicum schedule, and the specter of school not yet completely eradicated, I can honestly say that I have indeed felt helpless and like I have lost my fight. Don’t get me wrong, I won’t stop fighting for Nik, for my family, for myself. Well, if I’m completely honest, maybe myself a little —it’s always easier to put myself last when there are big challenges in our life and it feels like something has to give. But I am tired —too tired to stand today. (Forgive the self-indulgence which follows.)

On so many levels Nik is doing great. He’s recovered from our Texasinine dining experience and he’s still the same happy-go-lucky little boy he’s always been. The play and laughter are still present, though the eating anything by mouth still is not. He’s doing so much better now that he’s not in school. Except…

I know I’ve written about it a few times before so forgive me if I repeat myself —I’m too lazy to find the posts to link to. Nik’s been battling this odd “affliction” that no one can seem to identify. The lymph glands behind his right ear are chronically swollen —some days worse than others and some days causing more discomfort than others; the two are not necessarily mutual. Nik also has multiple nights of interrupted sleep from this same “affliction;” he will wake screaming in pain and hitting his head or biting his hand really hard. When this happens he is usually inconsolable. Advil given through his g-tube usually mitigates the worst of the pain after a while and he is able to go back to sleep for, oh, another hour or so. Then it all starts over again.

This behavior is not limited to overnights; it happens sometimes in the middle of a play or therapy session. This morning, Miss M got to witness it firsthand during feeding therapy. I thought she was going to cry because she was so upset for Nik. As quickly as it comes on, sometimes it can go just as quickly.

Throw in the lingering low-grade fever Nik’s been running nearly every day now since mid-September —in conjunction with the upper respiratory gunk, the ear infection, followed by the GI bug. Well, you might imagine that we are all a bit frazzled and concerned. Something is going on but no one seems to be able to tell us what.

Then, there’s the ugly specter of our school experience which isn’t quite over. You see, though we’ve had him home from school since September 17th, we haven’t yet officially removed Nik from school. I guess, technically, they can’t cite us for truancy since he’s not legally required to be in school. Still, the district might be able to argue that we are interfering with their ability to provide Nik’s free, appropriate public education (FAPE). The only reason this might be important is if we need to keep them in the picture after all. Though, one could argue that Nik’s IEP as it stands right now —still missing a speech/language/communication section with any evaluation of present levels of functioning as well as no stated goals and objectives, PT and OT goals which do not presume competence and do not address Nik’s significant sensory needs —could hardly be construed as a promise to deliver FAPE even if Nik were in school seven days a week!

I am still waiting for answers from Legal Aid. Meanwhile, school has scheduled an IEP meeting on the 15th for us to officially remove Nik and to “review the educational services for which Nikolas will no longer have access.” Ordinarily that wouldn’t make me anxious except I know that Medicaid now has a copy of the letter of medical necessity from Nik’s doctor. You know, the one that says he shouldn’t be in school due to his health? Yeah, that one. I am worried that they are going to try to use that as leverage to keep school in the picture and maintain responsibility for providing services. If that happens, we are back at square one as far as IEP’s go.

I can hear the old Clash song in my head, “Should I stay or should I go now? If I stay there will be trouble. If I go it will be double…” ARGH! Why can’t it ever just be a simple, cut and dried situation? And worse, why do I feel like the floor is constantly shifting under my feet?

I need to take some time to write out the pros and cons of each decision but I feel like I don’t have complete information for either case. On one hand, having school involved will mean slugging it out for an appropriate IEP; I already know that will involve due process and, possibly, litigation. Still, it would resolve the issue once and for all —hopefully in favor of increased and more appropriate services and supports for Nik. There are so many unknowns and the process can take so long. It could, possibly take us a year or more to get things sorted out.

On the other hand, if we simply cut school out of the picture, we run the risk that Medicaid won’t or can’t cover what Nik needs. Can we muddle our way through to cobble together some homemade program for Nik? Quite possibly, but it’s daunting and could have some pretty significant gaps in it —especially regarding speech/language/communication.

Why can’t I make a decision and stick with it and trust myself implicitly? Why am I so afraid of making a significant misstep? Why am I feeling so weak right now?

Why are you all so damned far away that I can’t come over and cry on your shoulder or drink tea (or something stronger) in the warmth of your living room or sit in the dappled sunshine in your back yard and recharge? It feels so hard to pick myself up and brush myself off right now but I know I must. But it’s lonely. Very lonely.

Even this doesn’t seem to help me today. Sigh…

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Day 18 of Nik’s being mildly to moderately ill with…something or other. First it was the upper respiratory gunk that required resuming his nebulizer treatments daily. Then, as the worst of that was clearing up, up popped another ear infection and a round of antibiotics. We were blessed with a whole two days in which Nik had no fever and only a slightly runny nose before yesterday’s, um, explosion of new symptoms. Let’s just say it hasn’t exactly been a bed of roses around here the past 48 hours.

Nik’s worst symptoms are gone now, thank goodness, but he has had this lingering low-grade fever that waxes and wanes; it has been the one constant over the past two and a half weeks. I’m getting a little worried about this one. It seems so early in the season for Nik to be catching every last little bug so, of course, I fear something awful. I’m sure it’s nothing terrible but my mind cannot rest until I know for sure. It plays into all my worst fears about his immune system.

Nik’s been mostly himself lately but he’s been sleeping more –particularly napping longer than he has ever done. Yesterday I had to wake him after three hours; he still slept ten hours overnight! He has been in a cheery, sing-songy mood most of the day; we even went to the park this morning just to get out of the house. We weren’t there for very long when Nik took my hand and walked me to the car. He’s been a little more subdued –meaning he’s not racing back and forth across the room every ten seconds and laughing hysterically. He’s enough “himself” that most people wouldn’t notice anything but NOT enough of his normal self that Niksdad and I are concerned.

We see the pediatrician tomorrow afternoon; I’m sure Nik will have no fever and be perfectly normal as far as they are concerned. Fortunately, I know the doctor doesn’t think we are over reactive hypochondriacs and she usually takes our concerns pretty seriously. Something tells me there’s more blood work in Nik’s near future.

In other news, I had a long conversation with the paralegal from Legal Aid yesterday afternoon. She is going to discuss our issues with the lawyer and determine what our options may be. She indicated that, based on the things I told her (and I didn’t even touch on everything!), it sounds like there’s an awful lot school is doing that is not quite on the up and up. Basically, though, they (Legal Aid) are going to help us find the answer to the question of how we get Nik’s services if we keep him out of school. I should have some concrete answers later this week.

Meanwhile, I got a very formal email from the case manager at school today; she is arranging an IEP meeting for us to “review the educational services for which Nikolas will no longer have access.” I was going to email back that I would let her know of the date and time were convenient for us after I heard back from our legal counsel; but I didn’t want to make her crap in her pants. Sorry, crass of me to say such a thing. The situation with school just makes me so angry. In fact, after talking with the paralegal yesterday I was even angrier when she told me that she really thought we had a potentially strong case if we decided to pursue options with school.

Here are a few lessons learned from yesterday’s conversation with Legal Aid:

NEVER NEVER NEVER sign anything you don’t agree with or that you are told you may not have a copy of the entire document to take with you –no matter what! If they threaten that your child’s prior IEP will not be in effect because it’s expired –they are wrong. You can amend it to state that it shall remain in effect for 30 days (while you work out the new IEP). You can even write that right on the IEP! In fact, you can go through item by item and indicate whether you agree with it or not. Yes, you can write on the IEP –ANYWHERE YOU WANT. They’ll tell you you can’t’; they’re wrong and hoping you won’t know it.

And those standard lines schools usually put in the IEP about “X number of sessions, a minimum of Y minutes, in a group, consultative, or individual setting” –also crap. It violates the intent of IDEA/IDEA 2004 which is that students receive the necessary services in a regular and timely fashion. The way Nik’s school words it leaves too much leeway for them to “consult” with staff as many times as they want and it could all be put toward that “X” amount. According to the paralegal, they are supposed to indicate a specific number and frequency of services in each area –for example “15 individual sessions, a minimum of 15 minutes each, no less than once every month.”

The way Nik’s IEP is written also leaves open the possibility that school could wait until the last month of school and provide services on a daily basis to “make it up.” While this may seem highly unlikely, it could happen; to date, Nik’s school still has no speech therapist to replace the one that left a month ago. The principal refused to provide compensatory speech services for Nik (meaning the district pays for him to go somewhere else until they have someone on staff) based on the argument that once they hire someone they could “make it up.” Definitely not in keeping with the spirit of the law.

And those outside evaluations which indicate your child needs significantly more than school is providing? You aren’t required to request in writing that they be made part of the IEP. Your giving them to the school implies said request. They need to tell you in writing why they aren’t changing the IEP to include the increased services.

Record meetings –and you don’t have to tell them until you show up with a tape recorder. Oh, and the notes the case manager (or whomever) takes during the meeting? You can ask that those be made part of the IEP, too. Uh-huh.

So, if we do have to scrap it out with school –it’s going to be a whole new game!

No matter how things go, though, you know what really chaps my hide? The fact that not one single person at school has bothered to call us to find out what they could do to make things right. The devotion they espoused, the love and concern for Nikolas? All crap. Lip service. What makes me sad for the other kids at school is that the staff doesn’t even have a clue that they are doing something significantly out of integrity with the intent of the laws.

Maybe I have a fever…I’m ranting now. Sigh…

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For some reason known only to them, Nik’s IEP team at school thought we were bluffing. When we mentioned that we wondered if school was the best place for Nik right now due to health concerns, I think they imagined we were trying to bluff our way into more or better services for Nik. While I will not deny that we want far more than school is willing to provide –in fact, we truly believe that Nik needs far more than school thinks he needs—we truly are extremely concerned for his overall health and well being. I mentioned this in a previous post here.

I think we need to remind school that Nik is not a “typically healthy” preschooler who just happens to have significant developmental delays. No, Nik is a child who has, in the worst of times, had a tenuous hold on life and, in the best of times, been able to remain healthy for as long as 2 consecutive months. His immune system is very weak. Perhaps his system is not as weak as a child fighting a life-threatening cancer, still Nik’s little body has been subjected to more antibiotics and surgical interventions and mechanical assistance than most of us will ever experience in our family lifespan. When Nik gets ill it takes him down hard and keeps him down. It takes Nik several weeks to regain his strength and return to balance, if you will. When he is in school and has maximum exposure to things that wouldn’t ordinarily level your average three or four year old, Nik barely seems to get his health back into balance when something else fells him.

We are fortunate that our pediatrician agrees with us and is in the process of crafting a thorough letter of medical necessity to support our removing Nik from school. We should have that sometime early next week. The good news is that it will allow us to remove Nik from an environment where he is exposed to every illness that comes along. It is also where he is bombarded with such intensely overwhelming sensory input that he shuts down after a short time each day. By the time he comes home from school, Nik is overloaded and out of control.

But, this new development also has a down side. Because we are not in a financial position to be able to take Nik out of school and pay for services on our own, and because Medicaid refuses now to pay for services that they say school is obligated to provide, we are going to be forced to deal with the school district after all. By law, if a child identified as needing an IEP is removed from school for medical reasons –versus simple personal choice– regardless of compulsory attendance laws (age 5 and over required to attend school; under 5 is optional) school is legally obliged to provide services to the child. This means that we will still need to agree upon an IEP which will dictate the level of services, etcetera which Nik will receive. The only difference is that he will not have to go to the school to receive them.

So, here we are again. Still frustrated and angry at the way the last IEP meeting went and having to crank it up all over again to find something we can agree upon. It is challenging, to say the least, as Niksdad would like nothing better than to cut Bobo (and therefore all of the school community) off at the knees; I mean that quite literally. Now, Niksdad is not normally a man prone to violent expressions of emotion or frustration so I know he’s beyond P.O.’d. Truth is so am I, but I know that we have to maintain some semblance of a working relationship with school as long as they are legally in the picture. If we thought moving to another school district was financially feasible right now, we’d begin packing our boxes!

So I’ve been mulling all this over for the past week – gathering data, evaluating the importance of certain goals and objectives, talking to our private therapists (whom we still have access to through November, I think), and so on and so forth. I’ve gotten names and contact information for people with the state autism society and the parent information center who might be able to assist us with wording of some letters of complaint and goals and objectives which will be put forth at our next IEP meeting –whenever that may be. I suppose in some ways, I am getting a great opportunity for a “do over” and a crash course in splitting hairs and balancing on the legal edge. It’s exhausting and confusing. And yes, our next step is actually to contact a lawyer from legal aid who can guide us through the process and, hopefully, avoid any need for serious legal intervention.

There are so many fine points I could enumerate about all the things wrong with Nik’s IEP, but it will just get me more riled up –to the point where I will not be able to function effectively. So I won’t go there today. Besides which, I have “gone there” so many times this week it’s not pretty. Of course, as Nik has gotten me up at 4:00 a.m. the last few days, I’ve had plenty of extra time for the journey!

I will say though that it amazes, and depresses, me to see how ridiculously low school staff sets the bar for our kids with disabilities. When “Johnny” is known to be a gifted student the expectations are stringent and sometimes set too high –I know from personal experience as “Jane” in grade school. Yet, when the child is identified as having any sort of challenge the expectations are so low as to be nearly insulting. (Point of fact here: Nik’s PT at school suggested it should take a year for him to learn to stand independently without pulling up on anything. Guess what Mr. Independent started doing all by himself this week? You betcha!) The goals are set so low and then school gets to be righteous in proclaiming, “What great progress your child has made! He met his objectives and, therefore doesn’t need increased services at all! In fact…” I guess it all boils down to who, in the eyes of school, has to do the greater portion of the hard work –the student or school? Seems like when school is expected to put forth a little extra effort, well…

So, I don’t know what it’s going to look like as we move forward –at least not in terms of therapies and educational supports for Nik. I do know that Niksdad and I have to weigh all choices in terms of what supports Nik in the longer term. Our greatest responsibility is, first and foremost, to ensure his physical health, safety, and well being. Without that, no amount of learning will ever be enough. I imagine it’s no more than any other parent would choose. But the very fact that we are forced to choose, well, as the Bard put it best. “Ay, there’s the rub.”

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