Alex Barton deserves better

Imagine; your five year old comes home from kindergarten one day, utterly devastated. He never wants to go back. You wonder what could possibly have upset him so. He’s a quirky, cute, smart little guy with a heart of gold. Sure, he’s got some challenges; what five-year old doesn’t? Okay, he’s being evaluated by school as possibly being autistic; but they know that so it can’t be a school issue, right? Something must have happened with a kid on the playground. Yeah, that’s it. Better check with his teacher.

This is what happened to five year old Alex Barton of Port St. Lucie, Florida:

Melissa Barton said she is considering legal action after her son’s kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn’t like about Barton’s 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.

Melissa Barton filed a complaint with Morningside’s school resource officer, who investigated the matter, Port St. Lucie Department spokeswoman Michelle Steele said. But the state attorney’s office concluded the matter did not meet the criteria for emotional child abuse, so no criminal charges will be filed, Steele said.

Port St. Lucie Police no longer are investigating, but police officials are documenting the complaint, she said. Steele said the teacher confirmed the incident took place.

When I read this story, I was utterly horrified. Yes, it is a blatant act of discrimination against a child who is potentially classified as “disabled” and who should be protected by numerous federal laws against discrimination. But this incident goes so far beyond just autism or disability rights that it’s mind-boggling; I’m not even sure where to start to express my thoughts and feelings.

First of all, what the hell was this teacher thinking in facilitating such a disgusting show of immature and exclusionary behavior? That the very person who is charged with educating young children and who should be modeling some fairly core, fundamental principals of human behavior —of which acceptance of each others’ differences and learning how to get along with those who may not be “just like us” should be paramount— should be the driving force behind such bullying leaves me outraged.

Frankly, autism is not even the issue here. I would feel the same outrage if this happened in any class or among any age group. Children are cruel enough to one another when left to their own devices; what could possibly motivate an adult to encourage such thinking, let alone acting on it? I simply don’t understand.

Before someone gets all righteous on me and slams me with the “disruptive behavior” card, let me be perfectly clear. I don’t know Alex Barton; all I know is what I read in some news articles. The child has some alleged behavior issues which, from the sound of it, have been disruptive in school. Do I think the teacher should simply turn a blind eye and roll over on this issue? No, but public humiliation and a class lesson in Bullying 101 is not the answer. It’s been indicated that he is being evaluated for Aspergers and may be eligible for an IEP. No matter what, it seems to me this goes beyond a mere lack of resources or training necessary to cope with challenging behaviors in the classroom and the teacher should be held accountable for her actions in some fashion.

Other bloggers are covering this story as well. I don’t have a full listing but you can check for yourself at the Autism Hub where you will find a phenomenal collection of voices from parents, professionals, and most importantly, autistic adults.) The first posts I saw were from Amanda and Bev. Bev’s post includes contact information for the school officials so you can let your voice be heard.

An interesting point of information to note here is that Florida is one of only a handful of states given a stellar rating by this watchdog organization for its recently enacted anti-bullying legislation. Unfortunately, it doesn’t go into effect until December 1, 2008. Perhaps the teacher thought she’d better get her licks in while she still could?

If you live in a state with no anti-bullying laws, you might want to contact your state legislators and urge them to draft and pass one. Your kid could be the next one voted off the island…

The opinions are flying on this one, folks. Some people actually think this teacher did a good thing. (Go here to read comments on the news article.) Lest my point be lost on you, I do not agree.

What do you think? How would you feel if it were your child?

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From Overwhelm to Anger in Five Days Flat

…otherwise known as an update on Nik’s friend N and his family.

I am happy to report that N’s mother, M, has shaken off the deer-in-the-headlights demeanor which was in full force on Saturday night. Apparently, my mentioning that there was still no speech therapist at her son’s school —Nik’s old school —was the first she had been informed of the fact. It took a few days for her to digest the information, formulate a plan, and take action.

While she was simmering, stewing, and plotting her moves, I took the liberty of speaking to Miss K, the speech therapist at the place where Nik has his OT, PT, and playgroup; she is the former school SLP who knows N very well. She was quite disturbed to hear that the school administration hadn’t at least informed the families that there was no SLP or made any arrangements for per diem coverage or anything. She told me to tell M that she should contact the school principal and ask him to arrange compensatory services immediately.

I called M today to pass along this information; my timing couldn’t have been better! M was, in fact, on her way to the school to corner the highly elusive principal. It seems she’s been getting the runaround about an appointment and had enough. Can’t say I blame her; Niksdad and my experience with the “new” principal left a bad taste in our mouths and I have heard from multiple sources both inside and outside the school that he has shown his true colors as a “master manipulator” and politician who doesn’t spend much time actually in the trenches of the classrooms and satellite sites. We’re not talking a large operation here, folks; there are four sites total and fewer than one hundred students involved. It makes me sad and angry but there is little I can do about it except file away the knowledge for future dealings with him, if necessary.

Anyway, M was on her way to the school and ready to spit nails in the form of going to the school board, filing grievances, etc. The only fly in the ointment as far as she could see was the fact that she had her daughter, S, with he and was concerned about how to stay focused on the issues at hand. Turns out her husband had to attend a chemical warfare training in preparation for his upcoming deployment; just hearing the phrase “chemical warfare” made my heart skip a beat —not in a good way. I immediately offered to take S for her; I didn’t know what it would look like or how Nik would handle it but I knew I needed to do that for her —and for N.

So for a couple hours early this afternoon I got a small taste of what it would be like to have two kids in the house! Now, I know that when you have a second child there is all sorts of adjusting that happens gradually; I’ve not yet heard of any child emerging from the womb already walking, climbing, and eating Cheerios or Goldfish crackers! None the less, it was a fascinating and daunting experience for me.

Nik was in his chair having his lunchtime tube feeding when they arrived. S was content to sit on the floor and play with Nik’s toys while Mary Poppins played in the background. Nik, by and large, wasn’t terribly interested in what this pint-sized carrot top was up to —until she climbed aboard his beloved musical scooter. Um, I guess I need to work a bit on his sharing skills; he responded by shaking his head and saying a very emphatic “NG-NG-NG-NG-NG!” and having a near meltdown over it. S, is apparently well-versed in the art of tormenting her older sibling and merely giggled as she rode away. Poor Nik.

(Disclaimer: I do have to acknowledge that S graciously shared her Cheerios with Nik more than once. Thus proving she has mastered the art of negotiation using her feminine wiles!)

But he got his own in kind once his lunch was done and he was out of his seat; he kept taking S’s beloved pink sippy cup. Being the pampered girly girl she is, S responded by shrieking, tears, and a quivering lip as she raised her arms to me to pick her up. Yes, she walks all over her docile big brother, N, but she’d never last a day with Nik! Nik wanted to clap her hands together and she got scared. She pulled the same shrieking, “Save me!” behavior. She’s adorable but, man, she needs to get a bit tougher!

(Yes, I admit it, I am grateful for my rough and tumble son —even when he discovers fishing in the toilet as a new way to entertain himself while Mommy is at the gym and Daddy is trying to study! Of course, perhaps my daughter would be just as rough and tumble, too? A point not worth pondering as it will never come to pass. Truly, it won’t —we’ve taken care of that!))

When M returned from her meeting, she was fairly pleased with the way things went. She received promises of immediate action and authorization for compensatory speech services (as well as some other things they discussed having to do with the physical conditions of the bathroom in her son’s classroom). I told her to make sure she puts everything in writing and to not trust blindly that school will do what the principal says will be done without committing it to the record. (What can I say? I am a tad jaded after our experience with the same school and same principal!)

So there you have the update on N and his family. By the way, M asked me to pass along her thanks for the prayers and good thoughts for both the school situation and for her husband’s upcoming deployment.

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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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Another Good Stuff Post

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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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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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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Rubbed the wrong way

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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