Case Closed

No more pencils
No more books
No more teachers’ dirty looks

Out for summer
Out till fall
We might not go back at all

School’s out forever
School’s out for summer
School’s out with fever
School’s out completely

Alice Cooper “School’s Out”

It’s official. We had our final IEP meeting today to withdraw Nik from school. It went better than we anticipated it would; Niksdad was convinced they were going to try to throw a wrench in the works. I was sure they wouldn’t. After all, they got the better end of the deal financially; they got funding for Nik because he was enrolled through October 1 and they are no longer legally responsible for providing services to him.

We had to hash out a few finer details such as the fact that the IEP signed under duress a month ago is not, in our opinion, a valid legal document. But, in the event that hell freezes over and we send Nik back to school before next September, he is entitled to receive the services outlined in that IEP. I won’t say “never” because that will only come back to bite me in the arse. However, Niksdad and I are very clear and very much in synch on the point that Nik will not return to school until the law says he has to.

We took Nik with us to the meeting; he was a great ice breaker. Miss J, his former teacher (“former” —I like the sound of that!), was a little stand-offish until after the meeting. I think she truly thought that we were taking Nik out of school because of the bad IEP meeting in September. In truth, that was only the final straw. After the meeting, J came over to say goodbye and to see Nik.

We made it nearly idiot-proof for the school and they seemed to appreciate it. One or two of the team members actually made it clear to us, after the meeting of course, that they thought we were doing the right thing. Miss D, the school OT (not to be confused with Miss D our new OT) told me she saw a difference in Nik since he’s been away from school and that she thinks he would be so much better off after a year at home. She told me to call her so she could go over the sensory evaluation and help us get that information to the new OT.

So, it’s over. Done. We are moving on down the road to new adventures, horizons yet unknown and unseen. I promise we’ll send lots and lots of postcards…

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Barely Standing

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

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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Friday Free For All

So here we are on Friday…playing hooky from school since we apparently need to sign an IEP to officially remove Nik from school. I haven’t returned school’s calls yet; I am waiting to talk to the person from Legal Aid to determine the next steps which will protect Nik. I also got a message yesterday from “Nurse Nosy” from school. Thank goodness for caller ID; I let the machine get the call. Her message was a chatty but brief “How are you?” and “What’s going on?” Funny, she didn’t bother to call at all during the ten days Nik was actually ill. Fishing for information much? Yeah. Oh, sure, I’ll call her back…right after hell freezes over.

But enough of that rant. Today I have random thoughts and stuff to share.

I usually delete all the Autism Speaks emails I get. Today, for some reason, I checked it out and found a link to an interesting RAP video. It’s made by a young man who works with autistic adults in New York. I couldn’t find a lot of information but it appears that he is a licensed professional who works in an institutional setting. It’s an interesting video. On the surface, I don’t necessarily agree with some of the choices he makes to describe autism. But then again, if he is working with an institutional population he may see more of the extreme end of the spectrum than I have. None the less, I think his message is heading in the right direction —no mentions of cures! It’s worth a look. Check it out and share your thoughts. You can find the video HERE.

On another tangent, I’ve not yet had the chance to read the wonderful book which Kristen sent me —What You Can Do Right Now to Help Your Child With Autism. That’s on my nightstand to start this weekend. I’ve also reserved a copy of John Elder Robison’s Look Me in the Eye at my local library and can’t wait until it’s available. Some other lucky person currently has the one copy available in my county. Yes, Delaware is a small state.

Meanwhile, Nik seems to be doing so well since he’s been home from school. I’ve already written about that in a few other posts. I have been trying to capture this on video but Nik is very aware of the camera and tends to either clam up or come right to the camera to play with it. So, it’s a little late for Wordless Wednesday but here is a quick clip to give you an idea of what I’ve been hearing more and more of these days. It’s becoming more consistent and ubiquitous —as Nik plays in the family room, during his PT and OT sessions, in his crib, at the dinner table, in the car. The boy has lots to say in his own unique and beautiful way.

I’ve had so many ideas for some posts inspired by other blogs. Alas, I haven’t written them down and they are gone for now— crowded out by all the recent events and concerns with school. If they return I’ll share them. If not, just know that those of you whose posts I read regularly inspire me to thought and action throughout the day.

Happy Friday.

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Leap of Faith

It’s over. Done. Chapter ended, book closed; we’re moving on. Tonight, with Niksdad literally helping me to hit the SEND button on the email, we withdrew Nik from school…and not for the medical reasons we thought we were going to use.

I was on my way to school with Nik this morning after his feeding therapy at Easter Seals; I happened to run into our advocate who was on her way in for a meeting of a special council for children with disabilities. She asked me to join the meeting and I said I couldn’t; I had to get Nik to school. She gave me the “hairy eyeball” and asked whether we had or had not decided to take Nik out of school.

Long story short, Nik and I stayed for the meeting.

When I came home and got Nik settled in for lunch and his nap, I called the Community Legal Aid Society; they have a special Disability Law Project group that handles all sorts of things including FAPE and insurance issues. They took my information and someone will review it and call me back. As I hung up the phone, I cried. Frustration and exhaustion hitting me all at once; I feel weary before the battle even begins. It shouldn’t have to be this hard.

When Nik woke from his nap, we played and laughed and sang and tickled. We played together with his shape sorter for nearly 30 minutes —taking turns, picking out the shapes when I asked him to, finding the shapes of the same color. It wasn’t always consistent and perfect but there was clear cut intent and understanding —and enjoyment for both of us. Every once in a while Nik leaned into me making smacking sounds to give me kisses. He chose another toy and snuggled into my lap with it. It was the way I always dreamed it could be to spend time with my toddler. The way I knew it couldn’t be if we had to keep school in the picture. Regardless of Nik’s placement as “home instruction,” if we pulled Nik out of school for medical reasons, we would still have to fight all the same battles with school.

Niksdad and I talked it over at dinner and decided that we were going to take the chance and cut school out of the picture entirely. We may have to do some battles with Medicaid but we agree that it will be easier than dealing with the school district. And, in the (please, God!) unlikely event that Medicaid completely stops all services — well, we’ll just do the best we can until we find other solutions.

I am not going to lie and say I am 100% comfortable with that possibility; I am afraid that I might not have what it takes to give Nik what he truly needs in terms of education and development without the support of PT, OT and Speech therapies. It’s all we’ve ever known. But, I do know a lot of rehab professionals who would give me great resources to use and I am smart and willing to do anything to help my child. I guess that counts for more than I give myself credit for. And Niksdad and I agree that we don’t want to have to go through the hassles we would with school until Nik absolutely must be there.

We’ve even decided that we are not going to follow up on some of the procedural types of things (and there were many!) which school screwed up. We will make it known for the record that we do not agree with his IEP as it is written; hell, it’s not even complete. There are two full sections missing —his OT and Speech present levels, goals, and objectives aren’t even done. But, we will make damn sure that when we ride this merry-go-round again that we play their game from the get-go. We will insist on every prior written notice, every 10-day notice for meetings. We will record every meeting, do everything in writing, and sign nothing we don’t agree with. We will make sure that we know the laws better than they do and use them to our complete advantage. When Nik is five.

For now though, we’ve jumped even though we can’t quite see the net. It’s a funny thing, too, because between Niksdad and me, I am usually the one taking leaps of faith and dragging him along with me. But it feels right —and good— that as I leap, he is right there holding both my hands, looking into my eyes, and telling me “It’s going to be OK.”

He’s always right, you know.

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Of course, I should have mentioned that I *do* have a safety net for myself…all of my blogging friends who keep me sane, send cyber hugs when I’m down, and celebrate the good stuff. I couldn’t do it without you guys!

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Wordless Wednesday

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What are IEP’s made of?

Snips and snails, and puppy-dogs’ tails…

More like gnashes and wails and long paper trails –that’s what this little boy’s IEP will be made of! While Nik is still battling the upper respiratory bug and the ear infection which have kept him down (but never out!) for nearly ten days now, I’ve spent the last few days doing some research in preparation for another IEP meeting.

I’m hopeful that the next one will go better, or at least leave us a little less battle weary. We’re going to take a very different tack on this next go ‘round and will do everything in writing and record the session. We’ve already got some specific points we need to follow up on which weren’t addressed in the last IEP. And, going forward, we’re going to be cordial but, frankly, a pain in the butt about requesting an independent educational evaluation (IEE). We have already provided our own privately done evaluation which school has virtually ignored. You may recall that Bobo indicated that it didn’t matter anyway. Well, we’ll see about that one.

We will play their game only better. We’re going to be looking over the goals and objectives with the proverbial fine-toothed comb. We truly feel the goals they have set for Nik are not appropriate and seriously underestimate Nik’s abilities. Of course, we’ll also be looking for an increase in services and now, with the change of Nik’s placement from school to “home instruction,” we’ll be pushing for a teacher to come work with him at least one day each week.

The challenge now is for me to sit down and write up cogent arguments supported by facts and concrete data. It’s a challenge getting my emotions and mama-bear protectiveness out of the way. But I have to in order to give Nik the best shot at a meaningful IEP. I don’t want to go through another year like last year. I mean, I know that Nik will grow and progress and flourish on his own (well, perhaps Niksdad and I might have a tad to do with it, too). But the things he could do, the catching up he could achieve if he is given the right combination of supports, services, and challenges… he could actually benefit from his FAPE instead of just filling space and marking time.

In the time since he’s been home, in spite of his being ill and running a continual low-grade fever, Nik has been so much more animated and focused. He’s consistently (well, almost consistently) cooperating in most requests such as “lie down so I can change your diaper,” or “turn the toy off and give it to Mommy, please.” Yes, that’s right. Along with the newly emerging skill of standing independently, Nik has already made significant progress on TWO of his IEP goals. Frankly, I don’t think it’s much more than the fact that he’s not so bloody overwhelmed by is environment. But, hey, what do I know? I’m “just his mom” and can’t be objective. (Sarcasm dripping from her voice…)

So anyway, I may be a little quiet online for a while as I gather resources and compile data. I’ll be lurking and commenting from time to time but I may not write much this week. Don’t worry though, I’ll be back!

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