Archive for the ‘placement’ Category

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.

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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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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If you haven’t read about our IEP experience, I suggest you start HERE first so the rest of this makes sense.

Some comments on my IEP post brought to light a critical irony which I forgot to include in the post:

I INVITED BOBO! (Shaking head in disbelief and shame…)

I had suggested he be invited b/c Nik was not going into the autism program but has definite behavioral components which needed to be part of his IEP. Logic told me that the district psych, the one who would be helping to put those things in place, might be a good person to include. HOW COULD I HAVE BEEN SO WRONG!?

As far as the rest goes, we had actually asked for copies of all the evals and materials in advance so we would go in with an idea of what school was proposing and be prepared with questions, arguments, what have you. I only got anything from the PT. Since the meeting ran so long, our advocate had to leave to take care of her own child. When we asked for the weekend to think on things and “digest” Bobo struck again. When we asked for copies we were told “oh, well it’s all in rough, draft form. We’ll get a copy to you as soon as possible.” Had I not been so shell shocked from the gross rudeness of Bobo, I would have said, “That’s fine. I’ll wait while you make photo copies.” Duh…but I felt like the deer caught in the headlights of an oncoming semi (truck).

So, in the harsh light of day brought on by ingesting reasonable amounts of ice cream (wink), Niksdad and I have come to some clarity about a few things. First, we will keep Nik in school for one more week. Why? Because we need to get copies of all those documents (even if they are handwritten) so we have something for legal records. Second, we need to get some very important information from the school OT –the results of Nik’s sensory evaluation and her recommendations for specific activities. (Though, I suppose, we could simply get another outside eval done through the hospital.) And finally, we do not want to cause an irreparable rift between us and the school district…we may need them one day.

Sometimes you’ve gotta think with your head not your heart…and it’s hard to do.

Hopefully, we will also get a letter of support (“medical necessity”) from our pediatrician which will eliminate the need for any struggles with the insurance over Nik’s services. Even without it, we will still be able to get services; I will simply have to request home nursing care (which we are eligible for since Nik has a feeding tube and seizures). Our advocate tells me “Watch how fast they jump to authorize his outside therapies! It’s waaay cheaper than providing a nurse!” Hmmm, who knew?!

We have decided that we are going to file a procedural complaint with the DOE. There are too many things which were mishandled for us to simply turn a blind eye because we are leaving. It won’t cost us anything to write a letter and it may help another family who’s been intimidated by Bobo or others of his ilk.

We haven’t yet contacted a lawyer but I imagine we will at some point in the near future. Sigh…
It shouldn’t have to be this hard just to be able to give your child a “normal” experience before he’s required to go through the educational mill.

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Dante counted wrong. That’s all I can say about today’s IEP meeting. It was, to put it mildly, the longest and most unpleasantly unproductive meeting I have been to in a long, long time. The actual content of the meeting was pretty predictable; we let school start to go through their spiel and, when the opportunity presented itself, we brought up the issue of whether school was appropriate for Nik at this point in time.

Now, I must rewind a tad and tell you that one of the attendees of today’s meeting was the district psychologist. Not an unusual happenstance at an IEP for a multiply disabled child who has been identified as being somewhere on the autism spectrum and having behavioral challenges to address. However, this guy not only didn’t know jack about my son, he couldn’t even be bothered to try to remember anyone’s name. Instead of “Mrs. Niksmom,” I became “MOTHER” —usually said in a very condescending tone and followed by the phrase “I’m going to say something you won’t like.” Yup, by the time this jerk was finished, I didn’t like ANYTHING he had to say; just the sound of his voice made me want to poke him in the eye. Lucky for him he was a few seats away and my arms aren’t that long!

Seriously, this guy must have taken a course in how to piss off absolutely everyone in an IEP meeting! He “Mother”-ed me until I wanted to scream; he ignored my husband completely. Nope, did not address him ONCE. And the school OT? “That young lady there at the end of the table…” Somewhere along the line after I had voiced significant concerns over the fact that there is no SLP yet and my son has a documented regression and loss of previous skills, Bobo (the sarcastic name our advocate came up with for him when we talked after the meeting) made an assumption that I was threatening litigation and got all snotty and condescending about the law says this and the law says that. Guess he missed the fact that I knew what the hell I was actually talking about. GRRRRRRR.

Bobo continued to be overbearing and condescending. I suppose I must take comfort in the fact that it wasn’t personal; the guy is just an ass, plain and simple. He interrupted everyone; he talked over people as they were trying to talk. I finally shouted at him to let me finish what I was saying. Did he? Nope. Our advocate is actually going to complain to the district about his unprofessional conduct.

So, when all is said and done? The meeting sucked and Bobo strong-armed us into signing off on something “to insure your son’s services since his previous IEP has expired.” We indicated we were doing so under protest; we didn’t receive any copies of anything to take home with us —not even the attendance sheet! We are actually considering filing a due process complaint.
Niksdad and I left the meeting —two and a half hours later— feeling like all the goodwill we had for the school staff —and theirs for us— been trampled and spat upon by this one individual.. In the end, we had nothing to show for it except wounds oozing frustration and anger.

Nik is not returning to school.

I don’t know what it will look like in terms of who will be responsible for services. Our advocate, whom I trust implicitly, assures us we will not be left high and dry. She’s already coaching me on working “the angles” (all legitimate by the way!) with Medicaid and the state DOE. As I may have mentioned before, she’s fairly well connected and has been doing this sort of stuff for many years. She has also lived through it with her own child who is now attending the local community college with accommodations and an attendant. Like I said —I trust her implicitly.

The hardest part for Niksdad and me has been in letting go and trusting that we are doing the right thing for Nik and for our family unit. We do. It is scary, I won’t lie. But I figure after the 209 days in the NICU, all the surgeries and the repeated scares and daunting diagnoses —well it’s just another day in the life. As long as we weather it together, we’ll make it through the storm.

Thanks so much to everybody for all the love and support and prayers. I guess, I forgot to ask for those prayers to include EASE! LOL. Oh well. The vision I put out there is going to come to pass. In that I do have faith.

Now, it’s off for a celebratory dish of B&J’s Karmel Sutra ice cream to celebrate and toast the great unknown.

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A quick update on the school situation —

I spoke with the case manager on Tuesday afternoon. While she seemed to be sympathetic to our situation, her official stance was “Let’s go through the IEP and see what school comes up with before we look at what’s next.” Toeing the party line, for sure. Needless to say, I got off the phone feeling very frustrated and a bit down-hearted. As I related the story to my husband Tuesday night, he reminded me —being so much more pragmatic and less emotional than I am on any given day —that to the larger entities involved (those being school and Medicaid), this is as much about a business negotiation as it is about the best interests of a small child who needs much in the way of supports and services.

In other words, my son costs money and they want to see who gets stuck with the largest portion of the bill. Ultimately, they will come around to doing something close to the right thing; I have to believe that or else I would give up the fight before I even begin. In the meantime, they will haggle and dicker like two old-world merchants transacting a complex ritual in the marketplace. Sigh…it is so hard not to take it personally and even harder still to wait it out.

The good news, though, is that our advocate is worth a gazillion times her weight in gold. Seriously, I cannot say enough about the way she is helping us —and it’s not just in terms of the specifics of this IEP. She is a very passionate advocate for children; having spent the past 18 years doing the same for her child with disabilities, she has been tested in the fiercest battles and has emerged with an iron will which doesn’t take “no” for an answer without first trying every avenue to “yes.”

It was at her urging that I delved into the murky depths of Nik’s past. It has also been with her assistance that I made a significant connection today with someone who has the ear of one of the top people with Medicaid’s Managed Care programs for our state. If someone can help push our case through, she may just be the one to do it. Of course, she warned me that she must first talk with our case manager and see where they stand on things so she doesn’t step on too many toes indiscriminately. Ah, yes, the wondrous joys of state bureaucracy; no agency is immune to the politics and the red tape. Ugh.

The other gift our advocate has given me is the constant reminder that, since we currently do have outside services for Nik —already authorized by Medicaid —we actually do have the power. I am not 100% convinced yet, but she keeps insisting that we will see in the end. I hope she’s truly right; I am anxious about getting my hopes up but they are definitely a bit higher than they were a few days ago!

Meanwhile, there is still no SLP at school to replace the one that left. When I spoke with the principal this morning, he told me that he’d made an offer to someone but she took another offer; I’m guessing it was in private practice or a non-school setting and infinitely more lucrative from both a financial and professional perspective. I feel terrible for the speech therapists at school; right now there are only two to handle 96 kids spread out over four locations and one of them is, I believe, only part-time. I can’t fault the previous therapist for leaving; she felt like she couldn’t make a difference for a single child given what she had to work with in terms of time constraints, limited resources, uninvolved families and administration…it’s a sad commentary.

What makes it even more frustrating is the fact that many of the new therapists at school are just that —new therapists. They don’t have the background and the experience to draw upon to handle many of the more complex needs of some of the children like Nik. So those kids are left with nothing substantial in the way of help. I haven’t seen or heard from too many other parents at school who either know that they can fight for more/better for their child or who have shown an interest in fighting for it. Sadly, many just accept whatever their child gets and figures “It’s better than nothing.” Obviously, I disagree. I almost think the little bit they get can be worse because parents make some assumptions about the consistency of what gets carried out in the classroom and don’t follow it up with effort at home.

I don’t mean to imply that I think every child’s parents thinks, feels, or acts this cavalierly; but they do at my son’s school. The demographics are such that many of the children come from single-parent homes, are being raised by grandparents, live in foster care or— worse —are homeless. There are some middle class families at school but they aren’t highly visible in their involvement. I’d like to try to change that; not only would I like to see those families get more involved, but I’d like to see the district provide training to all families about advocacy, IEP’s, planning for our children’s financial futures, etc.

I can see myself as an active, more deeply involved parent at some point. But that time is not now. Now, I want to focus on Nik and getting him the right supports to continue to flourish as he has begun to do…at home.


Tonight, though, I am a quivering mass of nerves and anxiousness. We have decided that the line we are going to take is simple — no school for Nik until he is 5. Sounds so simple, right? I know with every fiber of my being that this is the right decision. Yet, I am terrified of “them” taking away his services and leaving him, us, with nothing.

If you believe in the power of collective prayer or visions, please say one for us tonight and tomorrow? Pray, wish, envision, that Nik gets to spend the next year happily learning the things that most toddlers learn at home with their families. Envision that Nik stays healthy and grows stronger with each day. Envision that he continues to learn the fundamental life skills he will need when the day comes that we must send him out into the world. Envision that we can put that particular day off at least for another year.


In the midst of all the bleak feelings of frustration and near-despair, there have been some really sweet moments with Nik lately which have made me smile. Some of them have been visuals.

Others have been complete sensory experiences—like this morning. Nik awoke at 4:30 am — all sing-songy and chirpy. I lay in bed listening for a bit and smiled. Dragging myself out of bed, I went to scoop him up to go downstairs. When I picked him up, Nik wrapped his arms around my neck, looked me in the eye and then tossed his head back and laughed as if we had just shared the greatest joke. This was followed by a light touch of his forehead to my lips —our customary good morning kiss.

The merriment continued as he played in the family room while I made coffee and got the pump ready for his breakfast. I stood for a moment and watched him play. He was the embodiment of the most exuberant, unbridled joy. There was no one thing I could see that was making him happy —he just was. At one point, he was laughing so hard, he leaned against the TV, panting like a winded long-distance runner, then he doubled over and just crumbled to the floor in a heap of giggles. My face hurt from smiling so broadly.

If only we adults could start each day that way; wouldn’t the world be so much brighter?

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I thought I’d better check in and give an update on the school situation before time slips away and my already overloaded brain forgets …that’s a small window of time these days!

Let’s see, we’ve found out that —for right now— we cannot pull Nik out of school and get his therapies covered by Medicaid. On the surface, that really sucks; but there’s a glimmer of silver in this cloud somewhere. I’ve been having lots of conversations with lots of people who have volunteered to help us.

One is the “high muckity-muck” from Medicaid who is responsible for authorizations and works right under the Medical Director. She also happens to be the person who was Nik’s first case manager when we moved to DE in 2005; she has more than a passing acquaintance with Nik’s case. She basically told me that the school needs to step up and deliver the necessary services. We need to go through the IEP meeting and then look at what school hasn’t delivered on and whether Medicaid can bridge the gaps. A prime example would be feeding therapy; school does not do this so Medicaid will automatically approve it. (Um, wouldn’t it have been wonderful if the SLP at school had bothered to mention this like, oh I don’t know —A YEAR AGO so we could have done something about it sooner?!) But…Ms. Muckity-Muck has agreed to come to the IEP meeting to help do a little pushing back on the “Oh, no, that’s medical not educational” bull that’s been shoveled at us for the past year.

Did I mention that Ms. D —the world’s greatest OT —is also coming to the IEP? She’s basically going to tell the IEP team exactly what she sees and the amazing progress Nik is making with the right level of services. (He currently gets a total of 2 hours per week in 30 minute sessions.) She said to me today, “You know, Nik is so smart that if we can just get past all this sensory junk he’s got going on, he could really take off!” Did I mention we think she’s terrific? (She even called us tonight to give us some tips to help Nik after surgery tomorrow! Never would have gotten that from school, for sure!)

So let’s see…Duck #1 (Medicaid); check. Duck #2 (OT); check. Duck #3 just happens to be one of the most highly respected women in the local and state-level disability advocacy circles —and a woman I’ve know casually (very) for two years; she thinks Nik is a living doll, too. She’s the one I mentioned in my other post (I think?) who is an educational advocate for kids in the child welfare services system. Been playing this game for many years. She’s given us some good coaching so far. She will be at Nik’s IEP.

Finally, Duck #4 — the one we will keep in reserve in case we really need her — a legal aid attorney who does — ta da! —special education work. We haven’t made contact with her yet but she is a friend of a friend so we have an “in” with her when we need it.

So, while we aren’t thrilled with the idea of Nik having to be in school, we have greater hope that school will either deliver the goods directly or they will be backed up against that old proverbial wall and will have to provide funding for additional services.

I’ve been thinking a lot about some of the suggestions that commenters made on my recent post —especially about reduced hours. Since we still have the OT and PT authorization for a set number of sessions through early November —I checked it with Ms. Muckity Muck just to be sure —we are scheduling sessions two days each week in the early afternoon. This means I will take Nik out of school just before lunch, take him home to feed him, then go to see our beloved Ms. D and Ms. T. That leaves us a reasonable window of time to be able to go to the park, or my sister’s pool while the weather is warm enough, before Nik has to be home for dinner.

I am sure school is going to have a complete cow about this but I plan on pushing for that to be his daily schedule —leaving school at 11:30 each day. They’ve already lengthened the school day by 20 minutes on each end —making it a 6 hour 40 minute day. The change is just enough that it may impact Nik’s overall feeding and sleep schedule. He already doesn’t nap consistently at school —too much sensory input to be able to tune it out and relax —so his bed time ends up being earlier than “normal.” I won’t get into the whole complicated schedule we have to keep —what with meds before meals, meds with meals, separating one seizure med from the other, etc. Suffice to say, a seemingly small shift can have a domino effect that can have undesirable results. When Nik’s seizure meds are given too close together he is like a drunken sailor for hours afterward and is very lethargic and unresponsive in terms of interacting with other people or his environment. Great way to send a kid to school, eh?

Never mind the fact that he is 3 1/2 and shouldn’t be “parked” in a seat for the better part of the school day because they do not have sufficient staffing levels to handle his needs!

Anyway, I am rambling now but the gist is this — Niksdad and I feel like we are pulling together a more concrete plan and have some more objective eyes than ours watching over the process. We hope that they can help us prevail in getting Nik what he needs.

I forget which one of you said it, maybe Joey’s mom, about squeaking loudly enough to get the grease. That’ll be us.

May we make the Tin Man sound like an amateur.

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“I think we all feel like that, sometimes: forgetting that we have exactly what we need already within ourselves, if we can just believe in it.”

Those words, about courage, from Jennifer’s post today on Pinwheels really struck a chord with me tonight. It’s been a very trying few days here in NiksHouse. I feel like the dang centipede is tossing its shoes again. The up and down, back and forth of emotions and activities is exhausting. In spite of my working out regularly and trying to eat healthfully, I just feel like Dorothy must have felt in the poppy field. I simply want to lie down and sleep and let it all go on without me.

But I cannot. I guess that’s the cost of trying to be a good mother —no, of BEING a good mother. There isn’t much rest or respite and we have to take it where and when we can find it. I find mine online with you all. I’ve been jonesing to write for the past couple of days but haven’t been able to find the time. Now, it feels like I need to cram a lifetime into one post. Sigh… Did I mention that there are some incredible moms out there who simply must have ESP? I’ve gotten some wonderful emails from a few of you…just checking up on me. It means the world to me. More than you know right now. I may not answer each comment or email but PLEASE know that they have all touched me in the heart.

So I’ll start with the easy stuff first — Nik is having surgery Friday to remove the tube from his right ear. We have no idea if it will make any difference but we sure hope so! The episodes of rubbing and crying are increasing in frequency. Poor guy took THREE HOURS last night to cry himself to sleep. Nothing Niksdad or I did seemed to help at all. It was the tug-of-war with our hearts —the frantic cries and clutching at us for comfort, coupled with the pushing away because Nik was so tired and just wanted to sleep. Unfortunately, we couldn’t give him any Advil to help him make it through the night —too close to surgery. (Anti-inflammatories thin the blood…not good before surgery!)

We survived the bumpy night and made it through the way-longer-than-it-ever-should-have-been pre-op appointment today. Nik must have remembered last weeks’ EEG (I didn’t write about it…it was awful!) where he had to be strapped onto a papoose board and restrained for nearly an hour. (I cried when he finally passed out from exhaustion.) He had THREE major meltdowns in a two hour span while we were at the appointment today. Nothing I could do to help him except try to distract him from the nurses in their scrubs. Who knew “white coat syndrome” could start so young?

Back home for lunch, the rest of the day went great. Off to see Miss D and Miss T —our new favorite therapists. Nik is doing so much better and really making some wonderful progress. I could probably write several posts about that by itself. Suffice to say; lots of good things are happening in terms of his attention span, starting to play appropriately with some toys (instead of throwing everything), more social interactions, generally a bit calmer. You know, only Energizer Bunny to the 3rd degree or so.! Nik is communicating a bit more using some hand-over-hand gestures to put our hands where he wants them. For example, he is a smarty-pants and can buckle the lap belt on his chair, his stroller, you name it…but he cannot always open them. His new favorite game is “I buckle, Mommy unbuckles;” he clues me in to the fact it’s time to play by guiding my hands to the buckle —and wont’ let go until I’ve done my part, repeatedly! He is beginning to respond appropriately to things like laughter. He has the greatest little giggle.

So I’ve been having such a wonderful time thinking of all the fun Nik and I are going to have when he’s not in school this fall. Not that I had any specific things planned, mind you. It’s just the sense of freedom and relief since we made the decision to take Nik out of school. I was in the craft store the other day and walked past all kinds of finger paint supplies and fat crayons and play dough…and I had to stop myself from buying it all on the spot! I realized that being able to work with Nik at home will help fill some of my own need to do creative things. It might not look quite like I imagined, but —really —it’s the act of creating that is so crucial and that I have missed so much lately. I was getting really excited about home schooling.

Then the shoe dropped. Without getting into the details, Nik’s only insurance is Medicaid. For which we have been incredibly grateful; they’ve covered everything that we’ve needed so far. Until now.

Miss K, the admin at our therapists’ office, told me yesterday that they had gotten approval for only a limited number of weeks. Not a big deal; it’s easy enough to get new prescriptions/referrals every so often. The kicker, though, was the note on the bottom of the authorization form “…then transition to school.” I felt like someone had kicked me in the gut with steel-toed boots. Not the sharp stab of immediate pain, but the dull ache which builds and builds. By the time I got home with Nik, I was in a state of near hysteria. I held it together long enough to give Nik his lunch and get him down for a nap. Then. I. Lost. It.

I pulled myself together after Niksdad and I talked about it. We decided not to get too upset —well, a little is good —until we checked it out with the insurance. Maybe we misunderstood. Uh, no, apparently not. I talked to someone from Medicaid today and explained the situation and that we had not intended for Nik to return to school because he had not made any progress. The response I got was “Once a child turns three, it is the school district’s responsibility.” Ohhhhhh Kaaaaaaayyyyy.

So here I am with a 3 ½ year old who functions, for the most part, like a 9-15 month old —with some amazingly age- or near-age-appropriate scatter skills —with concomitant medical issues whom no one wants to take responsibility for providing the necessary and appropriate services. School says it medical; Medicaid says it’s educational. Mama says its bullshit!

Niksdad and I both agree that school is not the place for Nik. In the year he has been there —receiving his “30 sessions per year…minimum 15 minutes group, consultative, or individual…” in each of his services — Nik has made NO MEASURABLE PROGRESS. Now, I don’t say that to be dramatic. We have evaluations done by different professionals at different times throughout the year —including the recent evaluations done by the new OT, PT, and SLP. Every single one of them puts Nik at exactly the same age equivalent as the other reports. NO MEASURABLE PROGRESS.

Now, Nik has certainly made some progress, most of it very recently, but he continues to fall further and further behind his peers. This child whom every professional that has worked with him acknowledges is “incredibly smart,” “Very determined,” “a great problem solver” among many other things. How is it possible that this child then has not progressed? I guarantee it’s not for want of Nik’s trying!

So now we are in a holding pattern. In some bizarre turn of serendipity, I did not send the letter to school yet to withdraw Nik. Whew! I’ve gotten past the feeling of being kicked in the gut but not past the anger or frustration; I will need both to fuel me when I want to quit because I am tired.

I’ve reached out to some parents I know in my area who are very good advocates. Both have children with special needs who are significantly older — 18 and 22 — and both advocate for other children through advisory councils and through the child welfare system. I am hopeful that one or both of them can give us some guidance about our next steps. I am also looking in to finding an attorney should the need arise.

So here I sit, preparing for yet another of Nik’s surgeries. Oddly enough, it’s barely even registering on the anxiety scale. I don’t know if that’s because we are truly relaxed and know that Nik will come through with flying colors, or if it’s because I am so wound up about the school/insurance conflict. Whichever it is, we’ll take all the prayers, good karma, love, hugs, and laughter we could get about now. Our well feels a little dry.

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We made it through our non-IEP meeting today. I guess my message must have come through loud and clear to the case worker. Today’s meeting really was just about changing Nik’s classification and brainstorming on strategies for the fall. His full IEP meeting will be in mid-September and Niksdad and I are OK with that.

We did feel a little put on the spot this morning because the autism program coordinator and school psychologist —neither of whom had returned my calls about talking before today’s meeting — shared the results of their evaluation in the most rambling, round-about way. We were sitting there trying to decipher just what the psychologist was saying (do they every just speak like normal human beings!?) and trying to process the emotions. God I got so frustrated I just wanted to reach across the table and smack the crap out of the psychologist! It took them nearly twenty minutes to articulate this:

Nik’s overlapping medical issues, combined with his long-term
hospitalization may have contributed to, in fact may be the primary driving
force behind, his autistic features. Because they couldn’t really get an
indisputably clear picture from the ADOS, they agree that he needs educational
supports congruent with those a child with autism might receive. However,
they feel the classification that best suits Nik right now is “multiply
handicapped,” which encompasses the medical (CP, seizures, GI health), the
physical impairments (orthopedically & visually), and the extreme
language/communication delay.

OK, that’s pretty straightforward. It is also the classification we wanted. Yay!

The bottom line is that Nik will continue in the preschool but with some greater supports, including behavioral and intensive language/communication programs. There was a lot of talk about the potential to do a disservice to Nik in isolating him from typically developing peers; I agree right now. The autism classroom at Nik’s school is not set up to accommodate the overlapping issues he presents at this point.

Nik’s OT, Miss D, was at the meeting this morning and backed us up on the need for a comprehensive sensory evaluation both at school and by an outside professional. I was thrilled! The outside evaluation, if I understood correctly, will cover more aspects than she can in a school setting. Miss D’s feeling is that it would extremely useful information to have in structuring daily activities for Nik.

The new principal, Mr. L, was in there too. It was wonderful. The old principal never got involved in IEPs unless there was a significant problem (thus his butt being on the line!). Mr. L had some really useful input around the issue of a 1:1 paraprofessional for Nik right now. While it doesn’t give me what I thought we wanted, it makes a great deal of sense when I put it in the context of my extremely clever son.

The caveat Mr. L put forth was that Nik needs to generalize his learning at this point in his education (I agree) and the danger is that, because Nik is very bright and a good problem solver, he may learn instead that he doesn’t have to mind the teacher or other authority figures and that his individual para is the only one he has to mind. OK, I can see that as a highly likely scenario if I am completely honest with myself.

I do still have some concerns about Nik’s safety given his seizure activity. It is so subtle (they are short absence seizures —like staring spells) that they can be missed. The net result is that we cannot give reliable data to the neurologist in order to adjust meds. Also, Nik has been known to have a seizure while he is climbing or crawling and the potential for significant injury frightens me. I mean, hell, we didn’t spend all these millions of dollars (thank you insurance and Medicaid!) to keep our son alive just to have him fall and bust his head open, right?! (I am SO kidding, folks! Please no admonishing comments!)

Mr. L’s suggested solution is to educate the entire staff on what Nik’s safety issues are, as well as what we can reasonably predict they may be as Nik becomes more independently mobile. On the surface, that seems reasonable enough; we are willing to try it. But Niksdad and I made it clear that we reserve the right to reexamine the issue of a 1:1 if Nik’s safety is in the least little bit compromised. Miss J, Nik’s teacher, suggested that I come in at the beginning of the school year to do a little in-service with the classroom staff about some of Nik’s needs. I like that idea.

On a related note, I am excited about picking up prescriptions today for significantly increased therapies for Nik. Hopefully, we can get him into a good groove and making some significant progress between now and the time he goes back to school at the end of August. It would be wonderful if I could go back and show the folks at school how well Nik makes progress when he gets appropriate levels of services.

In this morning’s meeting, when I raised the issue of increasing frequency and duration of services, even Miss D (the OT) balked a bit. The old “school versus medical” line came up. I was ready! I reminded everyone that IDEA 2004 calls for preparing a child for “further education, employment, and independent living.” Further, I brought up that FAPE also encompasses the child’s ability to participate meaningfully in extra-curricular activities. The issue isn’t about medicine it is about development; that is about education. (Don’t get my Italian riled up, folks!)

OK, so I may not have been all softness and acquiescence this morning. Been there, tried that and Nik got the crappy T-shirt that ran and shrank in the wash —thank you very much! But I think our preparation and outspokenness made it clear that we weren’t going to just settle for the “same ol’ same ol’.” I feel good about today —I think.

I’ll let you know in September…

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Peaceful. That’s how I am feeling in this precise moment. Niksdad is at work, Nik is asleep, and I am online with my cup of iced coffee at my side and our two cats nestled onto their respective perches. There’s a quiet in the air outside; the calmness of an early summer afternoon stirred only occasionally by the hum of a lawn mower in the distance. It is as close to being alone as I will come for a very long time so I revel in it. For the first time in a few days I actually have time to sort out the muddle of things that have been swirling through my brain. Perhaps now I can begin to make some sense out of some of them and begin to articulate thoughts and feelings.

Nik’s last day of school was Tuesday. That means we got his year-end report card. It still cracks me up to think about report cards for preschool. Well, after reviewing Nik’s report card, I am definitely not cracking up any more. At first glance, the things that stood out to me most were all of Nik’s unmet goals and objectives. Only one of his goals was met and the rest were nowhere close. My gut reaction was outrage and then fear of what it might mean.

These unmet goals, were they evidence of my son’s failure or incapability? The school’s failure to effectively teach my child? My failure as a parent to push harder, sooner? I let myself dwell in that icky, upset space for a couple of days as I tried to find answers as to what to do next.

I’ve decided that, in this case, there are some opportunities for “do-overs” and I fully intend to take advantage of each one I can. Today, I can look at Nik’s IEP and see the glaring evidence of what we didn’t know we didn’t know back in September. It was Nik’s first time at school and, I strongly suspect, the school’s first encounter with a child as involved or complex as Nik. In a combination of or ignorance and an effort to give Nik and school time to figure each other out, Niksdad and I blindly agreed to what school put forth for Nik’s goals and objectives. In all fairness to the school, I have to say that —though Niksdad and I already suspected Nik has autism, there was no clear-cut diagnosis upon which school could build. There were too many other variables still in play —the multiple physical impairments, the prematurity, and the seizures— to be able to separate the wheat from the chaff, as it were. It doesn’t make me much happier but it does make me wiser.

Today, I am grateful for the clarity of hindsight and the continuing trust I have in my own intuition about my child. The current picture of Nik has become somewhat clearer to everyone and I think we can move ahead with some more concrete, appropriate goals for the coming year. Specifically, they will all have some greater degree of concrete measurability built into them so that we can see progress (or lack) sooner and can adapt and build more consistently. That is a definite frustration I faced with this year’s IEP —but I didn’t know what I didn’t know.

I don’t know if this will include a placement in the autism classroom or leaving Nik in the integrated preschool class. There are pros and cons on each side. If only I could find the way to elicit Nik’s input on what he needs. Boy that would make me the “Autism Whisperer” wouldn’t it!

The teacher of the autism program, which is fairly new in our district, has already voiced some hesitations to me about Nik’s orthopedic and visual impairments; she’s never had a student like Nik and isn’t sure how to handle some of those issues. As jarring as it was to hear at first, I appreciated her honesty. The flip side to the autism program, though, is the structure and the emphasis on communication which is not as keenly reinforced in the preschool classroom. I don’t know enough about the autism program and the philosophy or teaching methodology to be able to make a thorough enough assessment of whether it’s a good fit for Nik. I have “heard” that the focus is on the TEACHH method and not ABA or Floortime/RDI. My initial reservation to this approach is an understanding that this methodology doesn’t really take into consideration “recoverability” or the possibility that Nik would, with appropriate supports, be able to learn to overcome —or at the least, work with —some of the skill deficits he currently has. I hope that I have misunderstood the premise behind TEACHH. If not, it sounds like an approach I cannot embrace for my child (nor should I be asked to do).

The other major stumbling block for me in considering whether Nik should be in the autism class has to do not so much with the program as with Nik’s ability to transition into it. The autism program is at the opposite end of the hall from the preschool class with which Nik has become not only familiar but very comfortable. I fear that taking away absolutely everything and everyone familiar to him all at once while remaining in the same building to see them all every day might be akin to taking a favorite toy, turning it on so he can hear the sounds and placing it where he can see it but cannot have it. A setup for a complete and utter coping failure of the greatest magnitude.

The preschool isn’t exactly an ideal fit either, though. Yes, Nik has made some great gains in some areas —most notably gross motor skills. However, he’s not made any progress toward eating, communication, overall ability to attend and focus, and he still doesn’t have anything even resembling a sensory diet in place. This, despite numerous conversations with the teacher and OT about it. (Lesson learned: if it isn’t in writing, it’s not happening!) I think the greatest problem in the preschool is that there is a reliance upon Nik’s ability or desire to learn from the modeling of his NT peers. Well, if Nik were just a garden-variety orthopedically impaired kid, sure that would make sense. Nik clearly needs 1:1 support full-time and that just doesn’t happen in the preschool. But, based on my conversation with the school case manager, that could change. I hope so.

Meanwhile, the things that are great about the current classroom placement include Nik’s teacher, Miss J. She adores Nik and totally “gets” him. She’s said to me so many times, “I know there’s a key to unlock him somehow and I’m going to keep trying to find it.” Her co-teacher, Miss D., I think would be very happy to not have Nik in the classroom; he is a lot of work and I don’t get that she likes to work that hard. (To which I say, “Tough luck for you, lady!”) Other pluses in the preschool are the exposure to more music —a tremendous motivator for Nik— and exposure to not only NT kids but other kids with disabilities, too. The staff, overall, is much more comfortable with the orthopedic aspects of Nik’s challenges. And Miss J. is trained to work with visually impaired children.

So, my gut says that Nik would be better off in this preschool with some significant changes or additions. Definitely a 1:1 paraprofessional. Specific sensory activities along with a more predictable schedule, a more focused oral-motor program, some sort of intensive communication support (possibly augmentative technology) to help Nik with self-expression, and a behavior-based program of some sort.

I know that it’s never easy to give feedback on someone else’s child whom you’ve never met, but I’d sure love feedback from any readers with information on TEACHH, or tips on how to successfully navigate our way toward a better IEP for Nik.

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