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Can someone please explain to me how it is that insurance case managers think they know diddly squat about things like augmentative/alternative communication (AAC or AugComm) devices? Seriously. Now, I’m not talking about the rare one who may actually BE a user of AAC his/herself, or who may have a background in speech and language pathology, or who may, possibly, be a nurse who has worked with individuals who use AAC. No, I’m talking about your run-of-the-mill case manager.

But I’ll get back to her shortly…

When Nik had his AAC evaluation in January, we —the team, which consisted of an AAC specialist who’s been doing this for roughly fifteen or more years, an occupational therapist, Nik’s speech therapist, and me —agreed upon certain points of information and technology; the first, and foremost, being that Nik is still very much in the “pre-emerging” communication stage. He does not yet have a consistent method of communicating his wants and needs; he relies on random use of grunts, claps, joint referencing, and dragging a person toward whatever it is he wants. In some cases, Nik will resort to extreme behavior such as crying, thrashing, hitting his head on the floor —but only in what he might consider dire circumstances. Nik, being the independent spirit that he is, is pretty self-sufficient; if no one is around to get what he wants he either finds an alternate means of getting it himself or he simply changes his mind and moves on to something else.

In some ways Nik’s self-sufficiency is a good thing; in other ways, it works to his detriment. Where everyone —Niksdad and I included —sees it as a wonderful thing that our son is so easy going and happily entertains himself, it has actually kept us from recognizing that Nik doesn’t understand how to communicate. He knows that he wants to communicate and he tries; but his scatter shot method is not terribly effective. As long as someone is constantly with him we can interpret his body language or eye gazes. But when he is left to his own devices, Nik cannot effectively communicate. That is, it goes without saying, something that is vital to get along in the world outside our tiny little home.

Out of the AAC evaluation, we determined that Nik needs to be taught intentional communication; he needs to understand that there is a dance, a give and take which he can initiate and elicit responses which can give him a tremendous amount of power and autonomy. The question Niksdad and I —and even Miss M, his wonderful speech therapist —didn’t know how to answer was How? How do we teach Nik to communicate besides simply modeling it for him? How do we take our highly intelligent and resourceful child and open up a whole new world to him in a way that makes sense and works for him?

While he was in school, Nik’s therapists and teachers diligently tried to use some variant of a picture exchange communication system (PECS) to help him express himself. The problem, or so everyone assumed, was Nik’s visual impairment; no one really knew what he could see with his right eye —we still don’t. When PECS was clearly not successful, they moved on to what I call enhanced PECS; the staff simply added some sort of tactile bits to the picture cards.

I remember the teacher giving me a moderately large wooden letter P which someone had painted with dots of green textured paint. The green was because that seemed to be the color Nik either preferred or could see best (we still don’t’ really know as Nik can now pretty much sort and identify colors of blocks at will), while the textured, bumpy paint was, ostensibly, to assist Nik in realizing that the wooden object in his hand meant something. He was supposed to carry this letter P with him when he was outside the classroom. There was a mate to this letter P on the wall outside the classroom door. In theory, Nik was supposed to be able to match the two letters and know that this was where he was supposed to go. Quite a tall order for a child who still does not know his letters and who, at the time, was unable to match shapes or colors.

Needless to say, the experiment was not a success and they simply gave up. I mean, really, it was somewhat akin to handing a two year old your car keys in the kitchen and expecting them to find their way out to the car, open it up and insert the key in the ignition. The child may know that they are holding keys, and they may have some vague understanding of what a car does (takes them “zoom-zoom” with Mommy or Daddy), but the concept of the relationship between the two is a long way off. The objects are simply that —objects. They are concrete; the child does not yet understand what they represent.

Once I understood that, I finally understood why PECS and the large, green, bumpy letter P didn’t work. Nik was not yet —is not quite yet— at a point where he understands symbols. To him, that large lumpy letter P wasn’t even the letter P. It was just a bumpy shiny thing that felt kind of neat in his mouth. The PECS cards? Perfectly sized, shiny things to tear off a chart and throw as he listened to the rrrriiippp of the Velcro.

This brings us back to the AAC evaluation and the question of how to bridge Nik’s specific communication gap.

I know I’ve said it before that the evaluator was incredible. Truly, this man had near-mystic insights into my child that I thought only Niksdad or I might have. He recognized Nik’s strong connection to music and sound and his need to control things through cause and effect type mechanisms —and then figured out how to put them to work in Nik’s favor. The perfect solution —I thought this at the time when it was still an abstract to me and I think it even more now that it has become a concrete reality —is a programmable switch which can be used to record multiple messages which Nik can then activate by a simple touch.

The actual device is called a Little Step by Step 75. I can set up multiple sequences of things such as getting dressed, getting ready to go out in the car, getting ready for bed, and many others. I simply introduce the button to Nik and have him press it once for the first step in the sequence. “Time to get ready for bed! Let’s get my pajamas.” Then we do that step. He touches the button again “Let’s take off my shoes and socks.” We do it. And so on. Or, I can program every other line of a song we might sing together so he can sing a line and then I sing a line. The idea is to teach him the give and take, the cause and effect of intent. He communicates “X” and then we actually do “X” and so on.

At first it was very haphazard; it took us a while to figure out some set routines and to teach Nik to wait; this isn’t a toy for him to play with. It’s not perfect by any stretch yet, but we are seeing some remarkable progress. Where Nik once wanted to press the button repeatedly and didn’t really pay attention to the words, he now waits and even looks from the button to us as if he knows he’s supposed to push the button before we do the next step in a sequence.

The second part of what we learned from the AAC evaluation is how to help Nik learn to make conscious choices. At the time, his only method of making choices was to simply grab at whichever of two objects we presented. Often, he would grab at the one closest to him and it wasn’t always the one he really wanted. So another device, similar to the Step by Step, was introduced.
The iTalk2 is a nifty two-button device which allows us to record a single message for each button. We can use it for teaching things like “Nik’s turn; Mommy’s turn” or for giving him choices between two toys or objects (shapes, colors, etc.). We record the message for each button and then reinforce it with a photograph of the toy, or the object being offered. Once the choices are made, we can switch the pictures and messages to reinforce the need for Nik to both look and listen as he presses the desired button.

For example, we offer Nik a choice between his “kitty cat piano” and “number train;” whichever button he presses we give him the corresponding object. If he rejects it, we swap the buttons and try again. It’s not yet consistent but Nik is definitely beginning to catch on to the whole choice concept.

Now, let me interject here that these are by no means long term solutions. They are a first step to help Nik make some cognitive connections about how to communicate. Once he’s doing fairly well with these devices we will go back for a follow-up session with the AAC evaluator and look at additional ways to use these devices and/or what is next.

The wonderful thing about the button devices is that they are simple —both in operation and visual presentation. This is critical right now where Nik cannot tolerate a lot of “visual clutter” and does not yet have strong visual scanning skills; when he gets too much visual input, Nik tunes all of it out. I sometimes think this is why Nik doesn’t have a lot of interest in books; they require too much effort for him to be able to discriminate what he sees on the pages. The simpler and cleaner the page, the better he tolerates it —even better if the pictures are actual photographs instead of illustrations.

Another great thing about these particular devices is that they aren’t terribly expensive; if you’ve had any experience with AAC then you can appreciate how expensive even the “entry level” technology can be for certain types of speech generating devices. These two devices cost in the low hundreds versus the thousands. And, because they are deemed medically necessary, state Medicaid regulations mandate that this expense be borne by Nik’s insurance. That’s a blessing for us right now as we are squeaking by while Niksdad is in nursing school and I am not able to work.

Thus, we come full circle to the case manager.

Because I knew there would be a significant processing time for all the paperwork to be completed by the pediatrician and then the authorizations and vendor quotes, etcetera, I arranged to borrow both devices from our state assistive technology group (DATI). Once I finally gathered together all the requisite forms and information, I contacted the vendor to arrange the quote and finalize purchase arrangements.

SCREEEECH…(the sound of the brakes being slammed on!) It seems this vendor, the only one in our region who handles these specific devices, will not do business with our managed care organization (MCO) because they have been burned in previous transactions. Swell.

So, I placed a call to our marginally helpful, marginally less supportive case manager, to find out how to proceed. Her response underwhelmed me.

In spite of the fact that she and I had already discussed these devices, and the fact that no other manufacturer has anything like them, she told me to call another manufacturer to see if they had something like it! It seems Nik’s MCO doesn’t actually have any AAC providers they work with; I’m guessing for the same reason we’ve encountered. They do have a moderate relationship with DynaVox —perhaps because it’s a large enough company to have a national sales team and can cut out the distributors? None of which matters since DynaVox doesn’t have a comparable device!

I contacted the evaluator for some assistance; he’s been doing this so long that he is the go to guy for all things AugComm in our area and knows all the manufacturers and their product lines. He told me that none of the providers he knows want to work with Nik’s MCO. So, here we are caught between a rock and a hard place. I’ve got devices that we are using and seeing actual progress with but I have to return them on April 14th. I’ve got a vendor that has the devices we need and an MCO that has, essentially, tossed the whole mess back into my lap to solve.

Oh, and the case manager took it upon herself to call DynaVox* and thinks she has found a device which would “work well for Nik” and she’s getting a quote and working on authorizations. Wow. And to think I wasted all that time going to the most highly respected specialist in the state for an evaluation and recommendation? Who knew I could simply call the MCO case manager —because she obviously knows so much about AAC and thinks that this is at all similar to this and this. And the whole inability to understand symbols and visual scanning for choices, etc? Obviously not a problem in her mind.

I wonder if she does open heart surgery, too. Or prescribes eyeglasses and seizure meds.

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* I also called DynaVox and spoke with a very helpful sales person. When I described where we are in the process of teaching Nik how to communicate, she agreed that the device they have for “emerging communicators” was probably a bit advanced for Nik right now. She did offer to have the regional sales rep come to our home and show us the device so we could be absolutely certain; we may do that just so we have crossed the T’s and dotted the I’s.

Sigh. Another waste of our already limited time…

Stay tuned as the saga continues.

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ETA: Thank you for some of the comments specifically about some steps to take. In my haste to post this, I neglected to note that I have spoken with the Executive Director of DATI (which is also the key assistive technology advocacy organization in our state). She has already begun a dialogue with the top people at Medicaid — the ones responsible for selecting the MCO’s and determining policy, etc. They are working to resolve our specific problem as of Friday. In the longer term, they are looking into whether this is a more systemic issue and how to resolve it for all their stakeholders. I suspect it is systemic and needs to be addressed.

We have also been advised that we should not purchase the devices ourselves because that starts us on a slippery slope which may bite us in the rear later. I anticipate that we will go through several iterations of AAC devices for Nik before we are through, so getting this resolved quickly is a top priority.

I’ll keep you all posted on the progress.

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Will you pick up the phone so millions of kids can go to a doctor?

I’ve already expressed my opinion about President Bush’s recent veto of the State Children’s Health Insurance Program (SCHIP). But now it’s time for action from all of us who can make a difference in the lives of children —many of whom have no other alternative.

The President and Congressional opponents of SCHIP have put out a steady diet of misinformation about SCHIP. According to a recent study done by the Urban Institute, at least 70 percent of the children who will gain health coverage through SCHIP are in families with incomes below twice the poverty level ($41,600 for a family of four; $34,340 for a family of three).

SCHIP has made it possible for millions of children to receive health coverage at a time when fewer and fewer parents are able to cover their children through their employer’s insurance programs. However, the number of uninsured children has risen again in the last two years; this is due in part to the dwindling funds for the SCHIP program. The new bill is expected to reverse this disturbing trend while the President’s proposal would cover 800,000 fewer children than are currently insured through the SCHIP program.

(Read more about this critical topic here.)

On Thursday, October 18, the U.S. House will vote on overriding the President’s veto so these millions of children can get care. The President’s veto stands in the way of providing health coverage to nearly 4 million uninsured children. That veto would stop them from joining the millions of children currently enrolled in SCHIP. Rejecting the veto takes a two-thirds vote. It will be close, but your call can make a difference.

Please call your Representative(s) on Wednesday, October 17th using this toll-free number:
1-800-965-4701
Provided courtesy of American Friends Service Committee(AFSC)


Ask for your Representative’s office* – Urge him/her to vote to provide health coverage to millions of uninsured children by overriding the veto of the Children’s Health Insurance Program Reauthorization Act (officially designated as H.R. 976).

*If you don’t know your Representative’s name you can find it here. To see how your Representative voted on final passage of the children’s health bill go here.

If your Representative voted no, or didn’t vote, your call is especially important – some of the no votes or absences must be turned around in order to obtain the necessary two-thirds majority.

Even if you’re sure your Representative will vote in favor of the bill, please call anyway.
An extremely high call volume will let your Representative know that you are watching this important issue and that you want children to have health care. Encourage them to keep on fighting for this bill. We can get there if you call!

Please encourage everyone you know who cares about children to take the time to make this important call.

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NOTE: AFSC welcomes groups to circulate and use the toll-free number in support of non-partisan federal goals and without linking the alert to a website soliciting donations or actions which may be used to support partisan lobbying or work.

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

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

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

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

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

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

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

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

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

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

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

Today, I humbly admit I was wrong.

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

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

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

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

Image Courtesy of WallpaperDave.com

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Bush hangs his head in shame?
He SHOULD…

Read the story here.

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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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