Archive for the ‘evaluations’ Category

Well, in a continuation of Kristen’s reference to a perfect storm, I must say that today’s evaluation was absolutely incredible. I am practically bursting with hope and joy and good feelings. And you know what? It feels good! It must be contagious! I know, I know, it’s the whole karmic cycle, the you-get-back-what-you-put-out-to-the-universe kind of stuff but…REALLY! I am not sure if the car was actually running as we drove home; for all I know we could have been flying I felt that good!

The evaluators really got Nik —and he was gracious enough to let them. In an hour and a half, this team of two people was able to discern more about my child’s personality, his intellect, and his communication abilities than an entire school full of therapists, educators, and psychologists was able to over the course of fifteen months! That said, I must also acknowledge that both Nik’s OT (Miss D) and SLP (Miss M) contributed greatly to the process; Miss M accompanied us this morning and Miss D talked to the staff OT yesterday to provide her input. I also have to take a great deal of credit because I made damned sure that this was not going to be another “wasted opportunity.” I provided tons of information, insights, and feedback. I set up our morning so that Nik had opportunities to settle in a bit. I went in with no specific expectations —willing for once to let the process take us where it would.

And, oh, what a wonderful ride!

In the end, we came away with some concrete recommendations for a couple of basic devices and —even better —how to actually use them. Not just “Push this button to record …” but how to actually implement them as a fundamental part of Nik’s daily routines; we are just beginning the administrative process to actually get them. Perhaps most importantly, I came away with the absolute knowledge —firmly rooted in my gut now, instead of just in my conscious, rational mind —that the decisions Niksdad and I agonized over all those months have paid off. Richly.

What the team saw in Nik this morning would not have been possible even three or four months ago. I cannot fault the school for not wanting to see these things in my son, but I do blame them for their unwillingness to provide the environment he needed to make the gains I always knew were possible; I think they simply didn’t know how and would not admit it.

DL, the assistive technology guru was all that I had heard he was —and more. Or is it less? This very physically imposing man was the gentlest of giants with Nik; after a very momentary meltdown (on Nik’s part, not DL’s) there was an instant connection. DL engaged Nik in a way that simply captivated all of us. Nik gave his attention in brief intervals with an intensity I am seeing more and more lately. It is an awesome thing to witness in my child. I wonder if this is sort of like what Drama Mama was describing in this post today. In any event, DL was masterful in the most understated and reassuring way. Watching him in action with Nik was a gift.

During the course of the evaluation we watched Nik do things he’s never done before. I don’t know if he felt the good vibes and knew it was safe to fully reveal himself but it was remarkable. Sure, he sorted some cups by size and then by color (yay! those sorting and classifying skills are finally kicking in!), but Nik came to me seeking comfort and reassurance —not something he really does even in the throes of his worst episodes —and he accepted it. He complied when the OT asked him to come back to sit down with her. He initiated play with DL and then responded with appropriate frustration when DL wouldn’t let him do something he wanted to do.

DL commented to me, “it’s very obvious Nik fully understands physical cause and effect but he also clearly understands social cause and effect.” I was floored. How could this man be so incredibly insightful about my “challenging child” (what he used to be called by some of the staff at his school)?

And when did my son suddenly catch on to this whole social cause and effect thing? Clearly I wasn’t looking when it happened!

I imagine that — much like life in general —everything is a matter of perspective. DL is trained to see all actions and reactions as communication; in his eyes, Nik was communicating loud and clear. The objective, he says, is to help Nik find ways to organize those communications and to learn that there is a dance of give and take.

This morning’s experience left me with the very good feeling that Nik will not only learn to do this dance but that he will, in time, become the master.

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Apologies for the disjointed writing which follows; I am struggling to find words and string together coherent thoughts lately. I seem to be suffering from sort of mental (emotional) malaise and am finding that I get easily distracted. That is why I have been so “bloggy quiet” as Kristen wrote to me in a recent email.

Nik’s been ill again. It’s nothing mysterious or scary; just the upper respiratory crud that’s going around with a touch of stomach bug thrown in. He’s pretty much over it except for the super snotty nose which makes it hard to breathe and sleep at the same time. Breathing seems to be winning lately.

In spite of the illness, the tyrant, er um, I mean Nik has been ruling the house with an iron fist. His adoration for Mary Poppins? At an all-time high. If I am within reach of his hands, they are grabbing mine and dragging me toward the TV to turn it on for him. I think he now knows how to SPELL Mary Poppins. God knows, if I say the name he starts squealing and dancing around like a ‘tweener who just won Hannah Montana tickets from some radio show! Did I say I was fond of Mary Poppins? I may have been mistaken.

When I won’t give in to the MP obsession, Nik insists that I play. Never mind the growing mountain of laundry, the cat hair clumps on the carpet, the breakfast dishes in the sink, or the fact that Mommy hasn’t had a shower yet, Doesn’t matter to him. I am getting stronger at telling him “No” and sticking to it. Even when it results in the world’s cutest suck-up tactics. Really, where does the boy learn these things?! Nik will come over to the gate and look at me and start making kisses with his lips. If he’s really angling for my attention and cooperation, he will sometimes walk to the entertainment center, tug on the door, and say “Mamamama” before he comes back to tug my hands again. If that doesn’t work, he goes for the triple play which includes his rendition of “If you’re happy and you know it…” (lots of huh-huh’s and ba-ba’s with a few ga’s thrown in for flourish) combined with the kisses and calling my name.

Sigh, the boy is a master manipulator, um, negotiator. (Hey, it’s a matter of semantics, right?)

On the health front, Nik’s mysterious bouts of pain have diminished quite a bit since we started treating them like hypoglycemia. We still deal with the nocturnal waking but not as consistently. No word yet about scheduling his video EEG; we are entirely convinced his pain episodes are not related to seizures. None the less, it will be good to have a clearer picture of his seizure activity, too.

Nik is doing well with all his therapies; nothing really new and exciting to report yet, just slow and steady progress. Consistency. He did recently learn the concept of (and word for) smell. Now he loves it when I give him things to smell. His favorites seem to be peppermint extract and one of his blankets fresh out of the dryer. The kid’s got good taste. Of course, there is also the random smelling of his socks when he takes them off; he is all boy, for sure.

Nik is also getting more adept at communicating —or at least knowing for himself and trying to communicate to others —when he needs a break. Last week in OT, Miss D kept trying to get him to do something and he kept trying to get away and go into a room with the lights off. Usually, Nik will do anything for Miss D but he wanted no part of even playing with a favored toy. I wondered aloud if he was feeling like he needed a break. God bless Miss D for listening and trusting; she let him go off on his own and, sure enough, he took a very short break in the darkened room and then came back out to play with her. I’ve noticed him doing more of this sort of thing lately when he has had multiple appointments back to back or been out to the store or the mall with Niksdad or me. Where he used to simply fall apart, now he first tries to find some quiet space for himself. Often it looks like dragging s few toys into his Thomas the Tank Engine tunnel for some quiet play, or hiding under his giant green bucket with his star stacker toy.

Nik has also recently decided that naps are for babies. Oh, don’t get me wrong, the kid goes down every afternoon after lunch; he just doesn’t sleep anymore! When I offer him a toy or a book he will take it and play quietly in his crib. Sometimes he will simply sing little tunes to himself. He has begun to push the limits, though. The toys he has don’t entertain him long enough and he wants to be up and about. Yesterday, he cried and wailed in anger and frustration for a good 45 minutes before I finally got him up. Today he is singing. I suspect once he figures out that I am not coming to get him soon those songs will turn into protests.

As I write all this it occurs to me that what I am describing is a lot of age appropriate or developmentally appropriate behavior. What a nice thing to realize!

We are definitely approaching a crossroads of a sort; though Nik has many, many delays and multiple challenges, he’s doing very rapid catching up in some areas —especially cognitively. He’s learning the art of manipulation, effective use of the nuances of resentment and anger, and the value of judicious use of self-injurious behavior. Where once it was easy to distract Nik and redirect him from undesirable behavior, now he is set on what he wants and will brook no opposition. Sigh; he is in for a lifetime of heartache in that regard! Niksdad and I are constantly re-evaluating our methods of dealing with some of the less than pleasant behaviors; we need to make sure we are setting expectations that are reasonable and attainable for Nik while also making certain that he does not inadvertently get rewarded for bad behavior which is within his actual control. It’s that last bit “within his actual control” which is difficult to determine sometimes.

The pressure to interpret Nik’s budding communication is also tremendous. His voice, face, and body have all become much more expressive. The range of communication —that is to say, the variety of methods he uses —is not so great but, those methods placed into context communicate so much.

Tomorrow there will be a lengthy evaluation to determine what, if any, augmentative/adaptive communication device might help Nik find more and better ways to communicate. I am numb about it, frankly. Having been through so many evaluations and interventions in Nik’s short life —going through cycles of hope and disappointment, anxiety and frustration, and finally feeling left adrift to figure things out on our own —I am not certain anymore what I hope and expect from tomorrow’s experience.

I will try to write more about that after the appointment.

So now my brain has turned left when I want it to turn right and Nik has begun the wails of protest. Sigh…small measures of quiet are so hard to find some days.

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I love the internet and the communities we create with one another. One of my favorite moms —and a thoughtful, thought provoking blogger —emailed me tonight. Her radar must have been up because she asked how I was. Nothing unusual about that, right? I dunno, call it weird vibes but I thought I could sense “you’ve been kind of quiet, are you ok?” behind the question.

I’ve been wrestling with a situation —it’s not a problem, but it is something which requires resolution —and it’s been my own personal Deatheater all weekend long, just sucking the life and soul out of me. I’ve been thinking all day long about what I wanted to write tonight. My response to her email follows:

“We’re…ok…sort of. Long story short– we have a chance to fight
to take Nik out of school but it requires building a pretty significant
case to convince Medicaid that they should pay for Nik’s therapies
and stuff. I’ve spent the better part of the last 4 days combing through
records and drafting “talking points” for a conversation with the case
manager. I’m angry that I even have to do this. I’m depressed to see
the realities of Nik’s *minimal* progress over the course of the last
calendar year. And I am concerned at the concrete evidence that Nik
is also far more susceptible to illness than I had perceived.

BTW, don’t be surprised if you read some of these very same words on my blog later…I’ve been wrestling with a post about this issue. In light of how all consuming it feels, I’d say it’s appropriate. Plus, Nik’s IEP is Friday.

Plus…Nik fell again Friday and hit his head really hard. More seizures in the hour
following. He’s been falling more lately and hitting his head.
Tonight he pitched face-first onto the hard floor. Nice goose egg on the
left side to match the cut he got at school this morning on the right…”

So, I guess you could say my plate feels a tad overloaded and I’ve had my fill and then some! Lori at Spinning Yellow has a post up today about looking at her life in terms of time looking backward and time looking forward. That’s kind of what I’ve been doing all weekend long with respect to Nik’s life as it relates to medicine and education. Here is some of what I discovered:

In a full calendar year, Nik made nominal progress in OT and PT skills —as indicated by three assessments done over the course of the year (school intake last July, outside professionals in Feb, and his current private therapists this July). Over that time, he made roughly a three month gain; he had been making more significant progress with individualized services through early intervention.

Speech is even uglier…

Based on where he was when he started school, Nik has actually regressed to the functional communication of a 6 month old —courtesy, in my opinion, of the utter lack of stability in our school’s SLP staffing. Nik’s first speech therapist met him evaluated him, and left two weeks later. The next one lasted the school year but did very little. We spent a lot of time addressing the feeding issues —which it took Medicaid to tell me “Oh, no, schools don’t handle that stuff at all,” before we realized we had wasted an entire year for nothing. The actual communication issues? Not a whole lot of progress. But — and forgive me if I sound bitter here — it’s awfully damn tough to make any progress when you spend roughly fifteen minutes a week with a child. Even that wasn’t always one on one. How do I know, you ask? I requested the records from the SLP before she left school last Friday. Yeah, the revolving door of speech therapists strikes again.

So, let me put it this way —all things remaining the same as they were over the past school year, at his current rate of progress, my now nearly four year old will be functioning at the level of a two year old by the time he starts first grade. Now, I know there are many, many children for whom this would be remarkable progress. I also know that Nik started life with the deck stacked not exactly in his favor. But my son is so smart and keenly analytical. He’s the kid who mapped out how to get out of his crib without ever actually making practice attempts first. The kid who can watch me work a deadbolt a few times and then figure out how it works —again, on his first attempt. He is also the same kid who makes remarkable, steady progress when he is given the right level of services.

Bear in mind, this is all based on testing and evaluations up to —but not including— the arrival of Miss D and Miss T into our lives this July. Since then…nothing but progress and rapid gains, baby! Makes sense since he’s all of a sudden receiving roughly four times the amount of therapy he got all last school year.

I forgot to mention, all of this mayhem is the result of a great conversation with a very savvy advocate —the same one who is coming to the IEP on Friday! It is at her urging that I embarked upon this tedious and frustrating (albeit highly edifying) endeavor which I hope will pay huge dividends! Maybe that’s why it has been so difficult for me? Not so much compiling the evidence of things I already know, but the need to paint a picture of my son in such a light that we have a shot at prevailing in our quest. I am leery of getting my hopes up again only to be dashed upon the rocks once and for all.

So, this conversation with the case manager has not yet taken place; I wanted to make sure I had all my “ducks” in a row. I need to present a compelling argument to convince her that it is not only in Nik’s best interest for us to take him out of school, but that it is also a sound financial decision for Medicaid. I’ve compiled charts of data, lists of arguments, evidence to support the evidence. You name it.

I guess I can’t say it’s all been bad; I mean I did have a realization about Nik’s health which had not been so clear to me before.

Since I’ve been mired in depressing health statistics today I will share them with you. Lucky you! In the past 15 months —which is the time frame since he began school at the age of two and a half —Nik has:

— missed 32 days of school (more than 6 weeks). Of that time, more than 70% has been due to illness, including a week-long stay in the hospital in January.

— been on antibiotics 14 times in 15 months.

— lost an average of two hours sleep for every school day because we have to wake him early enough to get his tube feeding in to fit the school schedule.

— lost and gained and lost roughly the same three pounds —right now he’s holding steady.

— been diagnosed with an immune deficiency and now needs to be on antibiotics every time he is ill so he can fight off any secondary infection. The constant use of antibiotics puts Nik at significantly increased risk of developing resistance to the few drugs he can take; he is allergic to all “-cillin” drugs (Penicillin, Amoxicillin, 4 generations of cephalosporin drugs, etc.).

In addition to all that, there are numerous developmental reasons why school is not right for Nik at this point. Nik requires significant one on one attention and direction simply to engage him in a desired activity. He also requires highly focused, individualized attention to practice and retain new and emerging skills.

To date, despite numerous conversations about the need to do so, there has not been any effort made by school to address Nik’s perseverative behaviors —specifically doors and drawers. Nik doesn’t respond to a simple reprimand/rebuke. He needs active redirection until he has the cognition to understand either it is not something to play with or that he may do so as a “reward” for doing “x.” There is not a consistent manner established at school to address this “interfering” behavior. Their word choice.

It is becoming clearer and clearer to us that Nik is unable to process the bombardment of sensory input he receives during the school day. He does significantly better in a quieter, smaller environment. He does have moments of shining splendor during the school day but by the time he comes home from school, Nik is so dysregulated that he cannot function. He cannot make eye contact, he cannot sit still, he does not respond to attempts to engage him in anything; he simply likes to play on his own and on his own terms. This usually involves a lot of throwing toys and laughing maniacally! By dinner time, Nik is so exhausted from the day that he cannot pull himself together to function without the risk of injury (like tonight’s “facer”). Often, he is nearly passed out from exhaustion before his dinner is even finished.

Then, too, we have concerns about Nik’s physical safety at school during his period of being a “new walker” combined with his visual deficits. Of particular concern is his depth perception in an environment that is visually very flat and composed of cinder blocks and hard tile floors, lots of counter tops at eye height, etc. Nik has already had two episodes in two weeks of falling and hitting his head hard enough to cause clusters of increased and changed seizure activity immediately following. There is talk of trying a soft helmet but we have very strong doubts that Nik will comply due to sensory issues he has with things on his head. School is the only place Nik has this problem with any consistency.

As I re-read what I have written, I can understand my mood of late. It’s not that I don’t have the greatest of hopes for Nikolas —I absolutely do! It just frustrates me to no end to realize how much harder he —and we —have to work just to provide opportunities for him to make the progress he is capable of making. It galls me that we as a nation spend so damned much time, energy and money on a war we didn’t ask for and have nothing left to nurture and educate our greatest resources of all. And it makes me sad that I have to paint a less-than-flattering (though wholly accurate) picture of my son in order to help him.

Wish me luck, I think I’ll be talking to that case manager soon.

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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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Yesterday, as you can probably tell, was a difficult day for me. I am sure the fact that Nik had such a difficult day, too, didn’t help one bit. His blankety-blank ear is acting up again…worse lately than it has been in a while. No signs of infection (yet), but I think it’s on the way; he woke up screaming this morning and hitting his ear. Sigh…

Meanwhile, we’ve been starting to make some connections that are leading us to wonder if Nik may have some sort of vestibular disorder. It’s still early stages of mulling things over but we will definitely ask the docs to consider checking it out. He’s got significant vestibular insecurities (more than he used to), his balance has been kind of funny of late, and his eyes…well, they’ve got a lengthy history of their own. Throw in the whole weird ear saga that continues to worsen with no sign of infection. I don’t know that we would have put these particular pieces together but the new OT indicated some things in her initial evaluation which do seem to be cause for concern; it certainly bears checking out.

Yesterday was one of those days for Nik. Manic tears and laughter all morning long. Nothing made him happy or comfortable until he had Advil at lunchtime.

After a short non-nap (happy quiet time in his crib), my happy-go-lucky boy was back. In rare form, too! It never ceases to amaze me how Nik makes such rapid progress when he is well and healthy and how quickly he seems to lose skills when he is under the weather. In the morning, my angel couldn’t pull hiimself together to be able to cry out for “mamamamama”; even a trip to the park just didn’t cut it.

Yet by the afternoon he was literally climbing the walls…and the furniture…and the windows.

I took him for a walk to my parents house (roughly 2/10 of a mile round trip) without his orthotics; I wanted to wear him out so he’d sleep well! LOL. He walked the entire way there without having to stop and sit once! Just held my finger and marched his wobbly little body all the way there. He knew where we were going and was very excited; he adores his Nanny and Granddaddy! Good thing it’s mutual; Nik fairly attacked his Granddaddy by climbing onto his lap and demanding “kisses” by touching his forehead to Dad’s…over and over and over. My dad was in heaven.

Nik showed off his newly developing walking skills by taking a few steps here and there to Nanny’s outstretched hands, demanding that she play their special singing, clapping game. No one does it quite like Nanny.

Niksdad’s work schedule was changed for this weekend…some unexpected time off. Between studying for his final exam on Monday and getting some yard work done, I think we are going to try to have a date night tonight! Woo hoo!

Here’s to a brighter day…for everyone!

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So much to write about and so little time lately…

Nikshouse is healthy again. HURRAY! Thanks everyone for your good wishes and thoughts. Nik is completely over his summer cold and I’m on the tail end of mine —having sounded like a cross between Greta Garbo and Kermit the Frog for a few days there. Believe me, it wasn’t pretty! Nik’s stoma (g-tube site) is healing nicely and doesn’t seem to bother him in the least now. If only we could figure out the ear thing. If you’ll pardon the pun, it waxes and wanes; sometimes it seems to hit out of the blue and others we can sort of predict when it’s going to be a bumpy stretch. We’re somewhere in between right now as Nik slept through the night last night for the first time in a while. Alas, Niksmom did not.

Blame that Potter kid! I finally laid my hands on a copy of the new HP book and simply couldn’t put it down until the wee hours. I feel like someone might feel after being zapped with a cruciatus curse. I have no one to blame but myself. Sigh…it was worth it! LOVED the book. I won’t spoil it for anyone by discussing it here.

Let’s see, where do I begin? Wow, all of a sudden the lyrics to the theme from Love Story started running through my head. Think about it; they’re very apt when applied to a parent-child relationship. But I digress.

Nik had his evaluations with the new PT, OT, and SLP on Monday and Tuesday. We went for his first sessions this morning and have scheduled something at least three days a week for the next few weeks. I am so impressed with the therapists already. They zeroed right in on some of the key things we’ve been concerned about within the first few minutes of the evals. The greatest part is that the OT, Miss D (not the same Miss D from school), wants to spend a great deal of time working on just sensory stuff with Nik. Hallelujah! We’ve been asking for someone to do that all school year. She’s even contacted the pediatrician about increasing the number of OT sessions per week so she can work with Nik before each of the OT and Speech sessions.

The physical set up at the facility (I’ll call it the “gym”) is wonderful. Something for nearly every level of ability to accommodate all sorts of abilities while providing challenges, too. Today, Nik actually climbed up a ladder (with some help from Miss T, the PT) to a sliding board. Not steps…A LADDER. Who knew he could do that? Certainly not I. There are separate rooms for quieter, more focused activity which is where Miss D went through a pretty rigorous brushing protocol and did lots of joint compression before trying some vestibular activities with Nik.

We’ve made an interesting discovery. Rather, I should say we’ve confirmed something we suspected. Nik has some pretty significant insecurity about not having his feet or his trunk somehow firmly grounded. Miss D put Nik in the vestibular cradle/net swing (which is only 6 inches off the ground) and he completely freaked out. Screamed himself purple, thrashed and bucked until he got himself out of the swing. This cannot possibly be the same child who used to adore being cradled in a blanket and swung through the air by his Daddy, can it?

Nik had the exact same response when he was placed on one of the large therapy balls. I know it is something that the PT and OT will help him with —developing a stronger sense of where he is in space, but it was excruciating to watch him in such a panic. Mind you, neither Miss D nor Miss T persisted in any activity once it became clear that Nik was truly panicky. But the wildness which overcame him was instantaneous and heartbreaking.

On a happier note, Miss D and Miss T both feel that the sensory work will help Nik a lot. They both said they saw a significant change in Nik’s posture and muscle tone, as well as his ability to stay focused on an activity for longer than a minute, after a good 20 minutes of sensory activities. I did see somewhat of a difference. I guess I was just wishing that it would so immediate that Nik would remain calm and focused long enough to eat lunch when we got home this morning. No such luck.

Our eval with the SLP went well, too. Miss C, actually met Nik last summer when he started at school. She worked with him once or twice before she left for one of the charter schools in our district. She works at the school and the “gym”. She’s friendly and very informative. She is going to be working with Nik on some oral motor activities as well as looking at communications methods for him. We all feel that PECS is not really an option for Nik right now as he tends to put everything in his mouth (including the cards). Plus, Nik’s secondary “obsession” after doors? VELCRO. Miss C has her work cut out, for sure. We told her all the things we’ve tried for oral motor facilitation and she was floored. Hopefully, though, with the help of Miss D and her bag of sensory tricks, we might make some headway. Stay tuned!

Nik is making tremendous growth gains lately. My little guy who was once not even ON the growth charts —adjusted for prematurity or not— has made some great catch up growth. According to the nutritionist, Nik is now hovering somewhere around the 90-95th percentile for body mass! It’s all muscle, I swear! I watch Nik’s body lengthening and his legs getting more muscular; he’s losing even the toddler look he’s had about him. My baby is turning in to a small person, a beautiful boy. I still watch him sleep at night and see glimpses of the baby in his posture —but even those are becoming fewer and fewer.

Nik is now taking a few steps on his own throughout the day. A few weeks ago he would take a step or two then his eyes would go wide —as if he wasn’t quite sure how he did that —and he would plop to the floor on his bottom. Not so anymore. Now, he actively cruises along a wall and then lets go to take a step or two, sometimes three or four, and then launches himself toward a target —a wall, a door, a leg. Sometimes he will start to sit then stoops instead and places his hands on the floor. He cannot yet stand up without holding on to something but I see him diligently figuring out the mechanics of the thing. My days of even the slightest hint of peace are numbered!

Nik is also communicating so much more. No words but so many more consistent —and affectionate and funny —gestures and sounds. Now when putting on shoes and socks, instead of simply sitting between my legs, Nik must climb onto my lap and lean as close to me as he can without actually getting into my clothing! When brushing teeth or singing our bedtime songs, he does the same; he even admonishes me with a little squawk if I am not singing the right words or if I am singing too loudly. When I comply with his wishes, he sighs and settles back against me. Or he’ll turn his little face up toward mine and smile at me with a twinkle in his eye. Yep, gets me right THERE every single time. I kiss his forehead and give him a squeeze.

We don’t really need the words, but I long for the day I might hear his little voice say “I love you, Mommy. I’ll meet you in Dreamland.” I know that there are no guarantees in this life —for anyone —and I need to accept that he may not ever be able to articulate those words in the way I would hope. That is not to say I am giving up on the idea of Nik talking —very far from it. I will make sure he has every possible chance to learn to speak; I just won’t make it the be all and end all. That Nik has a means of communicating is far more important to me than the method used.

I have lots more on my mind but I think I’ll save it for another post (or two?). As my dear friend, Mary Poppins says, “Enough is as good as a feast.”

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I keep trying to write something today but my mind is whirling in so many different directions that I end up editing and censoring and losing my train of thought until I can’t even remember what I wanted to say.

Must be too many nights of interrupted sleep? Nik’s fighting another infection —a mild ear infection this time —and it makes him so uncomfortable. Combine that with the “normal” testing of limits and boundaries and, well, the picture really says it all. (Note: read the shirt.)
I am worn through and through lately and I don’t see an end in sight. Nik starts “summer vacation” in just a couple of weeks and I am trying to line up some independent therapy (which he needs regardless of the summer break) as well as keeping on top of the various medical threads we’ve got going. Let’s see, last week we had three appointments, this week it’s four, and next week we have another couple. Eleven in all this month…UGH!

I have been lurking on many blogs the past few days and finding myself alternately inspired and envious. Inspired by news of amazing progress of our children (here, here, here, here, here, and here), envious at the idea of taking any time to find my “long-lost mojo“, or travel to other locations for a vacation (like Kristen, Gretchen, Susan, and Jennifer). Then, I’ve been plain old emotional over things that really are quite gut-wrenching, and humbled by the way some writers can share. In short, I’m just not loving my own life this week. I’m feeling a little ragged around the edges. ANYBODY WANT TO TRADE FOR A LITTLE BIT??

So, the irony here is that nothing is actually wrong. In fact, Nik is continuing to make wonderful progress in some areas and not-so-wonderful progress in others. Welcome to parenting, right?

It’s just this freaking IEP and possible placement in a new school that has me so unraveled. The case manager from school called today to tell me the autism evaluator is ready to schedule the family meeting/IEP. I feel like the rug is getting ready to be yanked out from under me and I feel completely unprepared for an IEP meeting within the next ten days! Somehow I deluded myself into thinking we would wait until September. Shit, this feels like when Nik was born…we planned for February but he came in December. We weren’t ready yet. I’m still not ready yet!

Niksdad was off from work this week, courtesy of a scheduling SNAFU, so we took advantage of the time and did some projects we’ve been putting off. Catching up on finances, landscaping the front yard, getting our heating and A/C system replaced. We also spent some “quality” time together —as a couple and as a family.

My parents babysat on Friday night so Niksdad and I could *finally* go out to dinner to celebrate our anniversary (yes, that was last month). It was heaven and strange all at the same time. I cannot recall the last time we were out without Nik. Worse, I can count on ONE HAND the number of times that has happened since Nik was born. We made a vow to each other that we will try to get out at least once a month for “couple” time. It’s so challenging though with Niksdad’s work and school schedule along with Nik’s schedule of appointments and the timing of his feedings. It has been a real struggle for us to find both the time AND energy to do anything beyond collapse into bed with a book at night! Sigh…

We did get to take Nik to the water park at one of the state park areas yesterday. It was fabulous and scary. It reminded me a bit of Susan’s post (here) about the zoo. Expectations can be so funny. And they sneak up on one so quickly as they did me when we took Nik to the beach in June.

Nik did really well. He didn’t seem to mind the noise. For me, it felt like we were at a really loud cocktail party with kids running around in the background. My own “crowd anxiety” came up a bit but I didn’t let it stop me from having fun. Nik splashed and cruised around the kiddie pool and even went down the slides a few times (with assistance).

I was appalled at the rudeness of some of the kids. One little girl deliberately cut in front of us as we waited in line for the slide. We’re talking a kiddie slide with a line of maybe half a dozen kids; it wasn’t as if she had to wait hours for her turn. I got so angry that I actually said something. Usually, I would be quiet and seethe with indignation; that’s usually my M.O. if it is something that affects only me. But you don’t mess with my little guy! Oh, no, no, no!

I told her that she was a terribly rude little girl and should learn to wait her turn. She just glared at me and motioned for her friends/siblings to join her. At that point, I wedged my size 16 butt in front of the other kids (she was already at the head of the line) and told them that they would just have to wait their turn like everyone else…it was HIS (Nik’s) turn right now. I felt like the bitchiest thing on earth but I didn’t care! I mean, it’s one thing if a kid can fend for him/herself or at least speak up but Nik can do neither so I did it for him.

One of the kids actually tried this maneuver a couple more times and I finally grabbed a hold of his arm and told him he needed to just cool it, it wasn’t his turn. Where the hell are the parents of these kids? Who is teaching them anything about taking turns and sharing?? Is this the kind of generation of “typical” kids our society is raising?

OK, end of rant. Anyway, Nik had a wonderful time and was oblivious to the whole turn-taking thing. Was I too sensitive? Did I do something I shouldn’t have done? My instinct says no, but my conscience isn’t so sure.

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Boy, things sure change fast around here! Sort of like the old joke about living in New England…don’t like the weather, wait a few minutes.

So, last night I was all set to write about some stuff that has transpired this week —not an awful lot of it terribly wonderful. Not bad, per se, just really frustrating stuff with Nik’s school. It has had me feeling so overwhelmed trying to sort things out to find solutions for all that Nik is lacking at school. I simply couldn’t sit and concentrate enough to actually form the words into cohesive (or coherent) strings of language which would be meaningful to anyone else. (Hmm, I wonder if that’s what it feels like to Nik. If so, I can certainly understand the “zoning out” he sometimes does; it’s exhausting trying to communicate sometimes!) Anyway, I was all set to vent and didn’t. Then I had an experience today that helped put things in a new light —a calmer frame of reference.

First, though, a little context about where I was last night when I went to bed —

So here I had worked up a good and righteous head of steam over some things going on with the SLP at school —namely that she’s just finished her fellowship training and gotten her official license last week (and may have been working with an expired temporary license for the last six weeks) , doesn’t have the experience and/or skill set to deal with a child like Nik with overlapping issues, and she either doesn’t know that she doesn’t know or won’t admit it. Either way, it sucks. As a result, Nik’s had ZERO oral motor program since Christmas. There’s more but that’s pretty much it in a nutshell.

I also just found out this week that the PT we love, Miss B., is being deployed to Germany in September —for the entire year! Boy, I am soooo going to miss her! She’s been the one therapist at school who has made consistent efforts at not only communicating with me about stuff but actually having me join in on some of the sessions so I can get hands-on training from her for home carry over. She even joined us for swimming (with the class) on Tuesday to show me things I can do with Nik in my sister’s pool over summer break from mid-July to late-August (the one I am so anxious about!).

In addition, we had the letter from the neurologist and the non-eating issue (again) which I already talked about here. Add to the mix that Nik hasn’t been quite himself lately —more sleep disturbances, fussier, sleeping like a stone at school where he wouldn’t (couldn’t?) nap before. One of the little guys in his class went home sick the other day and I’ve been hearing about a stomach bug going around —including our pal, Charlie. Without going into specifics (which we can all well imagine, thank you very much for our stellar scatological detecting skills, eh?), I think Nik is on the verge.

So, the turnaround today came in an unexpected form. Nik’s feeding evaluation with a new therapist at the hospital. Ostensibly, the eval was supposed to be so we could take home some specific oral motor exercises to do both at home and school. Frankly, I didn’t have any expectations much beyond that. Call me jaded but we’ve seen tons of specialists including those at the pediatric feeding and swallowing center at CHOP in March of this year. Let’s just say, no one has actually bothered to listen to our thoughts, theories, and concerns —until today!

We came away from today’s appointment with a renewed sense of hope. Now, let me state for the record that I firmly believe my son can do anything. So trying to understand why he went from a kid who would eat baby food a year ago to completely tube dependent now, with all the cycles of eating and refusal in between —well, it just wears you down. When “the experts” are so far off the mark —“It’s a learned aversion.” “Simply turn him away when he does a behavior you don’t like (throwing food, spoon, bowl, etc.); he’ll stop acting out because he wants your attention.” “Make him wait and look you in the eye before each bite.” HELLO??? Have these people never worked with autistics before? Yeah, OK, I know it’s different for every child, but how many of you have a kid that, at the age of 3 ½, really cares if you ignore them when they don’t want to eat?? Nik is perfectly content if I ignore him when he’s like that!

Sorry, I went off on a bit of a tangent there. Back to today’s session…

This therapist, B, was amazing. She went through the whole “Have you tried…?” We had; it didn’t work. Instead of scratching her head and saying, “Well, I don’t know what else to tell you to try,” she dug so deep down into her bag of tricks and pulled out several rabbits and those scarves-that-turn-into-bouquets…you get the idea! For example, she helped us find ways to try to turn even Nik’s refusals into opportunities. You know those chewy tubes (the ones Nik will only bite once then throw)? Well, B, suggested that there is a way to stuff the end with something like a dried veggie stick (or mini pretzel stick) so that when Nik takes that ONE bite, he gets the proprioceptive input of the crunchy stick. Ok, maybe some of you have “been there, done that” but we’ve tried darn near everything to get Nik to bite anything. No go. Putting thinned purees into a cup for Nik to drink (he’s constantly trying to pick up the bowl and lick it so why not?). And those mesh feeder bags —Nik won’t even touch the bag; he flings it away from him or picks it up by the handle and bites the handle. Yet, he’ll chew on a wet washcloth. Guess what we’ll be using to wrap up some bits of fruit to try?

I think the thing that amazes me is that it’s all tuff that, when B said it, sounded so simple and logical. Yet NO ONE has ever gotten to that level of detail. B even has referred us to the hospital’s developmental feeding program so Nik can be seen as an outpatient by a team of people it turns out he is already familiar with from previous evals and such. Gee, I feel like Dorothy in the Wizard of Oz —it was right in my own backyard!

The real transformation came though when B listened very thoughtfully (and patiently) as we told her about the frustrations at school and the SLP lack of experience. B was so professional and diplomatic. She said that she understood what it must feel like for us but that feeding is such an involved area of specialization that most school therapists don’t have the background for many, many years. She helped us let go of the drive to make school handle the problem (my emphasis) and focus instead on how we can use the feeding clinic to reinforce things for Nik and create the carry-over and training that will allow him to progress at school. God, again, it sounded so simple that I can’t believe we couldn’t step back far enough to see it.

B is a gem and Nik took to her right away; he let her touch his face and rubbed his cheek against her hand in invitation. He initiated hand play, he smiled and laughed with her —in spite of his obviously not feeling well (as evidenced by bursts of hysterical arching and howling pain as if a horrible bellyache had taken hold). She was articulate, resourceful, creative, and she really respected our input. In short, we’d like to adopt her into our family of Nik’s special friends and service providers.

The catch? She’s moving 2000 miles away in three weeks! And our beloved pediatrician retires as of tomorrow, too! Seems like we just find the really good ones and then they move on. Sigh…

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(Note: Photos added 6/25/07)

Wow, my last post really took a turn after I got that email from P last night. Not at all what I wanted to write about but apparently I needed to. (For what it’s worth, I did send a reply to tell her how grossly offensive it was and that I hoped to never receive such a thing again.)

What I really wanted to write about is the ups and downs of our week. Been dealing with a variety of things. Some good, some bad, some just are what they are.

The bad first, so I can end on a high note. Got a letter from the neurologist —FINALLY —outlining his thoughts on Nik’s needs for educational support. To give some context here, the doc is a highly respected and brilliant man but he’s way over scheduled. We saw him in early April and have not yet gotten the official report. The letter, a one page summary, was sent only after I called and badgered his assistant —telling her, truthfully, that we were at a complete standstill around being able to advocate for certain things at school without that letter of support.

Be careful what you wish for. The letter is brutally blunt and, frankly, painful to read. In the summary, the doctor states that Nik has enough going on to warrant placement in a highly focused autism program (most likely at another school than where he is now), and that Nik may need to be in an even more specialized, smaller program to help with the “dysfunctional behaviors.” Ok, I know that the letter is strongly worded so as to get the attention of the school district, so they will take our requests seriously. I know that the letter does not negate anything about who Nik is or what he is like. But god almighty, it is hard to read those words in black and white.

Meanwhile, we are still waiting to hear back from the autism program evaluators so we can begin the IEP process, including any transition planning if necessary, for the start of the school year.

We are still struggling with Nik’s eating. After some great progress last week —moments which really made us all think he had turned the corner —Nik will not eat again. There is no identifiable physiological or anatomical reason for these cycles. I am not a trained expert, but I think the crux of the matter is sensory, compounded by typical toddler independence. Nik has the desire to eat and the hunger. He also has the drive to “do it myself!” but does not have the motor skills to coordinate self feeding. Nor does he have the oral motor skills to allow him to advance beyond pureed foods. Throw into the mix that Nik likes very strong flavors (horseradish, hot mustard, salsa, etc.) and food becomes a huge challenge.

There are days I have felt like a failure as a mother simply because the inability to help Nik in this area is just overwhelming. We’ve been through tons of evaluations and no one seems to have any insights. The speech therapist at school has basically done nothing —not a damn thing —to help Nik develop the oral motor skills he needs to eat. She has focused on the outside evaluations and consultations, “Let’s see what (insert name of specialist here) has to say.” Or has deemed it a medical issue versus an educational one.

When we told her about the upcoming eval scheduled for next week, her response was tepid at best. “Oh, maybe they’ll have something useful you can share with us.” I told her the plan is to create a prescribed feeding plan (including oral motor exercises to be done at or before each meal), she responded, again, with the medical vs. educational crap. I explained that this IS an educational issue and she continued to take a “let’s see” attitude. If Nik is placed in the autism program he “becomes someone else’s problem” in her mind.

I’ve already called the case manager to complain. One of Nik’s unmet IEP goals was around oral motor development as measured by increased intake of food by mouth. According to his report card, one of the supporting objectives was met because Nik kept his tongue in a more forward position THREE TIMES IN A ROW. Yes, you read that correctly. Out of an entire freaking school year, they think he met an objective because he did something THREE times. The boy is NOT eating by mouth at all right now where he started the school year eating nearly 100% of everything he was offered (pureed). ARGH! My next step is to ask to see all Nik’s therapy records to see just what the hell this woman has done (or thinks she has done)in those “minimum of 30 sessions per year.”

We see our fabulous behavioral psychologist, Dr. S., this week and will ask about referrals to outside SLP’s. We hadn’t wanted to set the precedent of distinction between education and medicine but cannot sit by and watch Nik struggle and fail. I would sell my soul to Lucifer himself before I let that happen.

So, that’s the bad stuff. Now, to wind up on a positive note…kind of like those Hallmark Hall of Fame movies…

Nik is making incredible progress in his physical and social development. He’s developing a funny rapport with himself in the mirror (and in windows, too!). Every time Nik sees himself in the mirror, he has to “kiss” himself (the whole hand over mouth, blowing a kiss routine) then sits down on the floor and claps both hands and feet as he laughs. It is hysterical to watch. Even better, though, is that Nik is also giving those kisses to Niksdad and me. He still tilts his forehead toward our lips but he now adds the “mmmmmmmmwah!” sound effect. Melts my heart every single time.

Nik is also beginning to do some of the “Itsy Bitsy Spider” gestures to himself in the mirror as he quietly hums.

My little boy is growing like a weed right now, too! Just ten days ago he couldn’t reach the latch on Nanny’s storm door —a fact for which Niksdad and I were very grateful as Nik is obsessed with opening and closing doors. Imagine my surprise yesterday when Nik reached right up and opened the very same door! Gulp!

Walking downstairs holding my hands —standing the entire way down instead of sitting on his bottom. He looks so proud of himself when he gets to the last step. As we pass the mirrored wall on the way through the dining room (long story to that decorating choice —not ours!), Nik stops, sits and claps with the boy in the mirror.

Let’s see, new sounds on the horizon. Lots of babbling but now with total inflection and intention —and sometimes significant intensity, too! Nik’s recently added a “raspberry” that’s more of a V or PH sound than a TH sound. (Sorry, I’m not good at capturing the essence of Nik’s speech yet. McEwen gets my vote for best technique there!)

Overall, Nik is making significant progress in either joint referencing or in leading us to what he wants. When I ask him certain questions such as “Are you hungry?” or “Shall we go zoom-zoom?” (which means in the car), Nik responds in both a physical and verbal fashion. He is making very deliberate choices when we offer him toys or something which requires choice. He really takes a moment to weigh the options before he emphatically makes his choice. Must get that from Niksdad —I’m the impulsive one in this family!

Nik’s attention span has generally improved. Don’t know if it’s dietary changes, maturity, or what…but we’ll take it! In spite of this, Dr. S. has mentioned wanting to at least talk about the possibility of medication for Nik to help him with self-regulation at meal times. It is not something I am comfortable with or willing to try yet.

Nik’s been communicating so much lately —like he did at the beach last week. It’s got to be so frustrating for him to be surrounded by a bunch of “dolts” who cannot interpret what he is saying. He clearly is saying something of significance when he talks to me. Sometimes I can tell by the tone that he is chiding me for something or that he is angry or tired. I can’t wait to see what we can come up with in the way of a new SLP to help Nik begin to have ways of communicating with others that isn’t about extremes of behavior to get attention.

Nik is making lots more eye contact with people he knows and loves. He totally captivates his Nanny and Granddaddy every single time they see him. He flirts and laughs and makes physical contact. His favorite pastime is leading Granddaddy around the house and upstairs and down. I love to see the joy and pride on my father’s face as he grumbles “are we done yet, Nik?” Yes, Nik requires LOTS and LOTS of energy.

Sometimes the sheer joy and pride I feel watching my son acquire new skills and deepening relationships —watching the unfettered joy and exuberance he brings to each experience —sometimes it just overwhelms me and I have to cry.

He is the Yin to my Yang, the up to my down. The joy to my sorrow. I don’t think it’s possible to love my son more than I do. But each time I look at him, I feel my heart get full to overflowing.

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…to be a pain in the neck, a thorn in the side, a nudge, a pushy mama.

Nik’s back in summer school now and I’ve been spending each morning this week right there with him to make sure he’s getting the gross motor activity and sensory input he needs before meals. This is not a new concept; I’ve been saying this to the teacher, to the para’s, to the case manager, the PT, the SLP, the OT for months. MONTHS. Hell, even the janitor is tired of hearing it! Hello, people, did you think I was talkin’ ‘cause I like the sound of my own voice?? (Well, ok, sometimes I DO —but that’s beside the point entirely!)

Well, amen! Hallelujah! Someone FINALLY AGREES!

Let me back up a step here and put my excitement (and cynicism) in context for you. Nik has never been a real “eater.” He spent so many months with a feeding tube down his throat or up his nose, followed by the g-tube stuck into his tummy when he was one year old. Nik has gone through cycles of eating and making great progress then not eating at all —for months at a time. We’ve had just about every conceivable kind of evaluation, intervention — you name it. NO ONE has been able to de-bug this one.

A year ago, when he started preschool, Nik ate nearly everything we offered him —all pureed baby foods with little to no texture variation. We’re talking roughly 70% of his total nutrition; we were gearing up for getting rid of the tube. When Nik started school, we told the staff what works to get him to eat —we had done great with it. The attitude at the time was, “Let’s try it our way and see how he does.” Well, here we are a year later and Nik is no longer eating. Nada. Zip. Zilch.

We’ve been working with a fabulous behavioral therapist, Dr. S., who’s finally decided it is time to tell the school to either “get on the bus or get run over ‘cause we’re moving on!” She’s going to prescribe each and every step of the program so we can get Nik back on track. We’ve known for months that the problem has nothing to do with Nik’s desire or hunger. The poor guy clearly communicates his desire to eat but when we sit down to do it —he falls apart. Nik cannot focus long enough to take more than a few bites, tastes really, before he is just overwhelmed. Even the things that used to work no longer work.

Not only have we known this but we’ve shared it with everyone at school until we’re blue in the face.

My theory is that Nik ate well a year ago because he was getting the appropriate sensory and motor input for where he was at the time. Then, he didn’t walk and hadn’t discovered the joys of the mobile prone stander or climbing and cruising —let alone sliding or swinging. He didn’t need as much intensive input. Today, Nik is a kid in constant motion, in spite of not walking independently. Niksdad and I have noticed for along time that Nik does much better when he has lots of gross motor activity and deep sensory input —and especially strong oral stimulation —immediately prior to each meal. He also does better with minimal distractions; school is pretty much the antithesis to this!

Unfortunately, Nik is also a child who requires perhaps much more consistency and structure than the “average” or NT child. Why is it that we, the parents of such children, completely get it —and it’s no big deal to work with, yet the “trained professionals” never seem to catch on until it slaps them in the face?

So, back to summer school we go —

The para we really liked, Ms. M., didn’t get placed in the preschool for the summer (and boy is SHE bummed!) and there is a new (translation: totally green/inexperienced) para working with the preschoolers over the summer. That means that Nik’s teacher, Ms. J. —who is one of the few that really gets Nik, is working directly with him especially for meals. My husband always says, “For those who are ready to learn, Nik is a great teacher.” GOD BLESS MS. J., SHE IS FINALLY READY TO LEARN!

After putting up with this nudgy mother all morning yesterday, listening to my thoughts and suggestions (but having no way to implement them at the time), Ms. J. got on board the Nik-train with us! Woo Hoo! Today, as I sat and watched her working with Nik at breakfast, she acknowledged to me that yes, Nik does need far more input than he is getting. She told me she spent time yesterday with the OT to find some solutions to help Nik and is also going to be looking at how to restructure parts of his day so he focus better. (Mommy does her happy dance here!)

This morning, I ran into Ms. D, the OT. She told me she was going to be recommending a brushing program and some specific sensory exercises and activities for Nik to do daily. She also told me she shares my opinion and frustration about the lack of a structured, formal oral motor program for Nik. Ms. D. also showed me a couple of things that she’s tried with Nik that seem to be working. Yay!!

Meanwhile, we have scheduled an independent feeding evaluation in two weeks. Yeah, another eval. This time, our focus is going to be on specific oral motor activities and exercises to be implemented at school. No more of each person trying “a little bit of this, a little bit of that!” No more assuming “he’ll learn as he goes.” Ain’t happening here folks.

Dr. S’s not-so-secret objective in making Nik’s feeding program so incredibly specific and regimented (not to mention far-reaching if Ms. J is looking at restructuring Nik’s day!) is to show the school how much Nik clearly needs 1:1 support. I think the fact that Ms. J. is the one doing the 1:1 support right now will only bolster the argument further come IEP time. Like I said, God bless Ms. J.!

Today I feel like we finally won a battle —which never should have been fought in the first place. But we still have many more skirmishes to go.

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