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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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The sun will rise as sure as there’s a day time
Don’t worry ’bout a thing….in time you’re gonna see
Your life is everything you make it
The hard times never last
Trust in your heart and don’t look back

“It’s Gonna Be Alright” (The Cheetah Girls)

As summer begins to wind down and the start of the school year is around the corner, my heart has been heavy at the prospect of Nik’s upcoming IEP. Niksdad and I already know that school is not willing to budge on some things —most notably a one-on-one paraprofessional for Nik. Their stance is that Nik is at an age where he needs to be able to generalize his learning and not rely strictly on one individual. The concern they raised, in our non-IEP meeting in July, is that Nik is smart enough that he may find ways to not pay attention to the actual teacher but look to his para for validation instead. In addition, the principal feels very strongly about educating the entire staff about Nik’s subtle seizure activity and promises that there will always be eyes on Nik. The principal is new to the school as of early July so I have to cut him some slack for his incredible naiveté. I know from first-hand experience that there are not always eyes on Nik and that there are times he has been virtually ignored by “seasoned” paras who were sitting right next to him in circle time —singing and gesturing their hearts out as Nik sat between them, ignored and not participating.

I know that my son has some very significant educational challenges and that the teacher really believes Nik has incredible potential; she just doesn’t have a clue how to “unlock it” (her words). I have tried my best to be helpful in relating my own observations and insights about what has worked with Nik. I’ve had countless conversations with the OT about my suspicions about Nik’s sensory issues being at the root of his extreme attention and regulation challenges. For whatever reason, my words seem to fall on deaf ears. This has often been the case with medical professionals as well; Niksdad and I persist and persist until, finally, Nik reaches such an extreme state that the doctors give in and investigate the things we’ve asked them to. Many, many times we have been proven right.

Righteous vindication doesn’t feel very good when you are watching your child suffer. Or regress in skills or fall further and further behind his peers when he once made such rapid progress that therapists were amazed at how quickly he learned.

With those things in mind and with the rapid and marked progress Nik has made in just a couple weeks of intensive work with his new OT and PT, Niksdad and I have decided it is time to pull Nik out of school. I’ve checked all the legalities with the Department of Ed (DOE); Nik isn’t required to be in school until he is five. Even then, it doesn’t have to be a public school, just “an educational program.” Our situation is such that Nik qualifies for significantly increased services through his Medicaid so we don’t have to worry about too many out of pocket expenses for therapies. As it is, the insurance has already authorized a 100% increase in his OT (from one session to two per week), a 200% increase in his SLP, and a 300% increase in OT. This means that Nik will now be getting the level of services which were recommended by multiple independent evaluations done over the past 12 months.

Sure, we could keep Nik in school and add the therapies on top of that, but we have to weigh the cost of that against the quality of life for Nik and for us as a family. He is simply too young to be spending every waking hour in some sort of rigidly structured activity. Seven hours of school each day —20% of that spent confined to a chair for tube feedings, plus another two hours of therapy daily (including travel time) —home just in time for dinner then bed (since Nik doesn’t nap much at school and cannot stay up much past 7p). Then throw in the time missed from school for doctor’s appointments…It’s just not realistic to expect ANY 3 ½ year old child to tolerate that much without some serious PLAY —let alone my little Energizer Bunny to the Nth Degree. The more we thought about it and talked about, the easier the decision was to make.

To say that Niksdad and I are excited at the prospect of Nik’s inevitable progress would be a gross understatement. Plus, the idea of not having to wrangle with school over every last little thing —the classroom staff about feeding, nap, and communication about Nik’s day, the school nurse over every last little tweak to Nik’s tube feedings, finding out the hard way that they ran out of diapers or some other supply for Nik, etc —feels like another headache mitigated.

I know it will be a challenging transition for us —Niksdad begins his nursing clinicals in another couple of weeks and will have very little free time (especially after putting in hours at Home Depot, too!) and I may feel slightly (a lot?) overwhelmed at first. But it also feels a bit like I finally get a shot at the “new mother bonding” that I didn’t get when Nik was born. By that I mean that he and I will sort of feel our way through it together. We’ll figure out a new schedule, new activities and adventures. I have already begun to set up a regular therapy schedule for Nik — the same time each day for OT and PT —and we’ve gotten insurance approval for the developmental playgroups, too! Imagine —built-in play dates! I have visions of finally being able to do the things that “the other moms” get to do —Mommy and Tot swimming, music class, toddler story hour at the public library. Walks in the park with other moms, the occasional shopping trip with a friend and her kids — things we couldn’t even dream about doing before because of Nik’s school schedule. And it’s not like I will get another chance at this gig…

I think I may become less angst-ridden about my own future as well. Niksdad and I had a long discussion about him being the sole income earner; he finally gave me “permission” to let go of my guilt about not contributing financially. I no longer have to think about rushing out to get a job —any old job for income — unless or until the time comes when Nik is ready to go back to school and I have an idea of what will make me happy. Have I mentioned how much I love and appreciate my husband? I DO.

I will no longer have to schedule my workouts around Niksdad’s or Nik’s school/work schedule quite as rigidly. I now have the freedom to put Nik in the childcare area while I work out and get a little “me” time. What a concept! I know my own mother is anxious that I will become more overwhelmed and exhausted, but I truly feel this is the right decision for us.

We will figure it out and find a new equilibrium. Just as we did in those awkward and terrifying first days at home after our 209-day NICU stay. I think we’ve done fine so far. In fact, I’d say we’ve done very fine, indeed.

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We’ve been through some things together
With trunks of memories still to come
We found things to do in stormy weather
Long may you run.
~Neal Young

Wow, who knew there were so many of us on this same journey?! Thanks everyone for not only your supportive comments on my existential crisis, but especially the reminders that “this too shall pass” (eventually). I guess I’ve gotten so used to worrying about something that it was inevitable I would turn my radar inward to myself and my marriage. Not a bad thing to do every once in a while, I guess.

Things are looking brighter these past couple of days. Niksdad seems more relaxed —now that he’s embraced the “no work for two weeks” concept. He’s been taking Nik to the park in the mornings after breakfast; giving me a chance to get back into my workout routine which has been interrupted by first Nik’s then my illness. It’s felt really good to get out of the house to do something that makes me feel more vibrant afterward. Sweaty, but vibrant.

We’ve made plans to take care of some projects around the house —big ones, like replacing the yucky carpet in the family room with some sort of wood laminate. The family room is where Nik spends a great deal of time and it takes a real beating. The carpet is ugly and stained and I don’t even want to think about what’s possibly growing underneath! We won’t be able to do the actual work until Nik goes back to school on the 22nd. But, the process of planning and making flooring selections —which of course leads to discussions of other projects —has felt good. It feels reminiscent of the early days in our marriage when we would tackle projects together in our first house —the one in CA, where we lived when Nik was born. We were partners and made a great team.

In fact, we still make a great team; everybody remarks on that and tells us how lucky we are. They are right. We’ve had to shift our focus quite a bit in these past few years but we’ve always worked well together —planning, discussing, researching, strategizing, dreaming together, and inspiring one another. Maybe we took our eyes off the road for a little bit but I think we’re on the right track.

It’s a bit like all the times I’ve been on a car trip by myself (in the olden days before Niksdad came along). I’d be off on an adventure, driving down the highway —not always toward a specific destination. I’d look down and the gas gauge would read near empty and the next exit wouldn’t be for miles and miles. I’d drive along, darting anxious glances at the fuel gauge every few seconds, wondering when I would run out of gas on some lonely stretch of road. Know what? It never happened; I always made it to a gas station in the nick of time.

I need to remember that more often when I get antsy about my life —especially my marriage. The frustration, though, of not being able to have consistent time alone together gets tough. Unfortunately, we aren’t exactly in a position to shell out bucks for specialty care givers —which are VERY hard to find around here. In fact, there’s such a demand that no one with the right qualifications wants to work the small number of hours we need. The respite system in our area is the pits for us right now. Medicaid doesn’t recognize the need for couples to go out once in a while as legitimate. If I worked or were in school, then they would consider our eligibility. The only drop-off respite we’ve been able to find doesn’t’ work with our schedule and our needs. So, we limp along with the help of my folks for now. During the school year I think (I hope) it will be a bit easier; some of the Para’s also do childcare/respite once in a while and I know lots of them!

Meanwhile, though, we’ve been making plans to do some things together as a family; things like a return trip to the beach, a trip to the zoo, a local peach festival this weekend, the pool at my parent’s country club in the afternoons (weather permitting), and a trip to a new “Can Do” playground which opened up about an hour north of here, near the hospital where Nik sees all his specialists. We might even try XBos again!

It feels like a time of renewal somehow. Maybe not quite what I had envisioned —you know, candle light and romance —but perhaps better, more important as we, Niksdad and I, learn to make the most of the precious time we do have together. Time that must include our son right now.

Long before Niksdad and I got married, I wrote a vision for myself of what I wanted our marriage to be:

Niksdad and I have a loving marriage and raise healthy children in a warm,
loving, creative, and stable home. Our relationship touches the lives of
many as we open our hearts and home to many children. Our love helps heal
others.

Deep, huh? It may not look quite the way I had envisioned it all those years ago, but perhaps we haven’t lost our way after all. Maybe I just need to check the map every once in a while to realize that the wrong turns or missed exits will still get us to our destination —wherever that may be. And if I let myself, I just might enjoy the ride.

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

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

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

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

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

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

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

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

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

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

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

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

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

I’ll let you know in September…

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I’ve been thinking a lot today about Susan’s post on The Family Room today. She really captured the essence of where we are in our lives right now —sort of. We are very far along the acceptance curve but are still somewhat in “siege” mode, too. It’s a strange and uncomfortable place to be. I so often find myself teetering on the brink of full-on acceptance and being able to simply adopt new routines and adapt when and where we need to. I’ve been able to work out regularly and have managed to lose 40 pounds —nearly half of the weight I’ve put on over the years since Nik’s birth. Stress is a horrible, horrible thing if you don’t create healthy outlets for it —but that’s a post for another day or perhaps even another blog altogether.

Then, there are days like today when my adrenaline flows and I am in my battle regalia.

Today Nik woke up very congested AND runny, coughing, feverish. In short, a sick little boy. Well, at least we think he’s sick. It might possibly be a strong reaction to the DTaP booster he had to get on Thursday. It is part of the ongoing evaluation of his immunodeficiency. Yes, Nik the human pin-cushion has to get jabbed with needles way more than anybody should have to. And we still don’t know the extent of his immune function. The immunologist on call today said, “Well, it is most likely just a reaction to the shot…but it could be an opportunistic infection trying to take hold what with his compromised immune system.” WTF…thanks, I needed that like a hole in the head today.

Going back to Susan’s post, I found myself nodding my head “yes, yes” as I re-read the bit about “a simple cold can throw us all into chaos” and wondering when, if ever, I will be able to stop getting anxious over every last little sniffle or cough Nik has. I hate that such a thing has the power to jerk me right back to the panic of all the months in the NICU. The times we were sure Nik was off the ventilator for good, or had turned some corner then…BAM!

On days like today I feel like I haven’t come nearly as far as I think. I hate that I let it distract me from other things I need to be paying attention to. I become obsessed with finding the answer, the “fix”, the “cure” for whatever physical ailment is standing in our way.

Arrogance? No, desperation.

I really need to be focusing on something else right now —getting ready for a non-IEP IEP meeting on Tuesday morning. That stirs the siege mentality/feelings, too; after a pretty mediocre school year for Nik, it feels like we have to get this one right. This one is a biggie; this is laying some significant ground work. We are meeting with the IEP team plus the district autism coordinator and the psychologist to discuss their evaluation of Nik. We’ve put in calls to both of them to ask for a private conversation before-hand but have gotten NO RESPONSE. I would rather have some vague idea of their general thoughts so as to not be blind-sided in the middle of an IEP meeting. I hate when that happens because I get caught in the emotion and get stuck there. It is not useful or helpful for Nik in any way and I have learned —the hard way—not to operate from that place if I can help it.

To that end, when the school case manager called to schedule the IEP —at which neither PT nor Speech will be represented (WTF, I didn’t agree to that!), I told her that she should absolutely not plan on walking away with anything vaguely resembling a signed IEP. I want this meeting to be a discussion about Nik’s needs and classification and placement (possible school change may be on the horizon. We have very mixed feelings about that!) and that we would need to reconvene for his official IEP later.

Just in case, though, Niksdad and I are preparing a list of the things we want incorporated into Nik’s IEP, including the rationale supporting the educational necessity of each item (e.g., “supports independent living,” “necessary for safety,” or “supports LRE”…those kinds of things). For each one the school denies or doesn’t address, we will follow up in writing and ask for explanations. I’ve been reading Mom Without A Manual lately and have been taking some notes based on her recent experiences with her school district.

I keep telling myself that if we can get through Nik’s IEP for next year and are able to get him the supports he needs (which includes a 1:1 paraprofessional full time), I can let go of the fight or siege mentality and begin to settle in and simply BE Niksmom and Niksdad’s wife. Pursuing my own longer-term interests will have to wait a little longer —and I’m OK with that. Right now, I have two guys in school who need my unwavering support. Nik needs me to fight for his rights until he can do so on his own. Niksdad needs me to believe in him and support him in his very challenging career change from engineering to nursing. He is working toward the ultimate goal of becoming a pediatric nurse anesthetist; it’s a long road but he is brilliant and dedicated. He is building a new future for us so I guess you could say he too must feel under siege sometimes.

Lest I get stuck in the bleakness of the kaka going on today/this weekend, I have had glimpses and reminders of all the progress Nik has made and continues to make every single day. The continuing efforts to communicate with those around him, the easy laughter —often at appropriate moments, the physical shifts toward more standing and attempts at walking, the music, the kisses to the “other boy” each time he passes a mirror, the sippy cup with the straw, etc. Those are the things which pull me back from the brink of despair when I am besieged with Nik’s latest illness and the worry that it will turn into something bigger, the IEP planning, or the discovery that Nik has not had ANY speech therapy at school since the June 1st. Yes, I have to take a deep breath and allow myself to focus on the here and now.

Unlike some couples, we haven’t yet figured out how to make time for too many dates or conversation that doesn’t revolve around Nik, school, or work. But we’re getting there in baby steps. Regular workouts, sitting down to dinner together, making time at least one day each week for a family outing of some sort. Like Susan said, “It’s small, but it’s progress, and that makes it feel huge.”

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Thanks everyone for all the good wishes…they must have helped Nik dodge the stomach bug “bullet!” Seems he’s fine after just a couple of days of crampy and cranky bouts. I have to wonder if the change in his enteral formula has made a big difference, too. It’s got significantly less dairy and his overall GI health seems better than ever before (knock wood!). I was worried b/c the last two hospital visits (stays, really —a week each time!) have been due to a GI bug that really knocked him down. WHEW!


In any event, it’s been a relatively uneventful few days; that’s always a good thing round here!


I’ve been trying some of the tips that B gave us during the feeding eval. While I wish I could say Nik is eating like a champ, but at least he is eating a bit more and is not fighting me as much. Maybe he is more ready now? All I know is that, for the past few days at least, mealtimes have been much nicer. Still godawful long — 20-30 minutes for oral feeding followed by nearly an hour for the tube feeding then the extra 20 minutes Nik has to remain upright because of his reflux. Multiply that by at least 4 meals a day and, well, you can probably figure out why I don’t get out much on weekends except to the park or for walks with Nik! But it feels like we’re heading in the right direction…bit by bit. Or should I say bite by bite?

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We’ve been avoiding TV in our house for a while (sort of like Kristen’s house, too), but lately Nik has been getting very bored and restless with the usual toys he plays with while the tube feeding is going in. So I decided it was time to try a little distraction. Inspired by a couple of other families (here and here) who have been checking out our favorite nanny, I brought out our Mary Poppins DVD this weekend. I have to say, Nik is quite enamored of not only Mary Poppins herself but finds George Banks to be hysterically funny and laughs out loud when the penguins dance with Burt. Niksdad has even come up with his own lyrics to the “I love to laugh” song (the scene on the ceiling with Uncle Albert) which makes Nik crack up even when he’s crying!

You know the one — it goes “I love to laugh (ha ha ha ha), loud and long and clear. I love to laugh (hee hee hee hee), so everybody can hear. The more I laugh (ho ho ho ho), the more I fill with glee. The more the glee (hee hee hee hee), the more I’m a merrier me!” Nik laughs himself silly over this one! Niksdad, being the manly-man he is, has co-opted this tune for his own silly version which makes Nik positively HOWL with laughter no matter the occasion!

So, at the risk of completely destroying Niksdad’s street cred (he gave me permission!!), his version goes something like this:

I love to fart (thttt thttt thttt thttt), loud and long and clear.
I love to fart (phttt phttt phttt phttt) so everybody can smell.
The more I fart (insert sound effects), the more I fill with glee.
The more the glee (sound effects), the more I’m a pew-pew-er me!

Yep, gotta love my man! (Did I mention he’s a highly educated science-geek type? No, REALLY!)

So, there’s our dirtly little secret. Hee hee hee.

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Ok, on a more serious note, I had a wonderful experience at Nik’s school this morning. I took him early so I could try to wear him out on the playground before breakfast. Um, guess which one of us needed a nap when we were done? Right! zzzzzzzzzzzzzzzzzzzzzzzzzzz.

Oh, sorry, where was I? Right, school.

I ran into the grandparents of a little boy who’s new to Nik’s class, J. J reminds me a lot of Nik when he started school a year ago —won’t bear weight on his legs, doesn’t talk, won’t eat, cute as a button (well, he is!)… He lives with his grandparents who, from what I understand, are basically raising him and his little brother with very little involvement from the mom. I’ve seen Grandma a few times and exchanged pleasantries and encouragement about J’s progress. Today, though, I met Grandpa. The first thing Grandpa told me is that Nik is the reason J is in this school.

Huh?

Turns out when Grandpa came to tour, he was bowled over by Nik (probably literally, since he tells me he saw Nik wheeling himself about in the mobile prone stander) and the independence he saw in him. The teacher told him that Nik wouldn’t stand or walk when he first came to school. That clinched it for Grandpa. Grandpa is, apparently, a big fan of my son. I was very touched.

It meant more to me than I could possibly express at the moment he told me. See, when Nik was born, and often throughout our many, many months in the NICU, Niksdad and I said we wanted to make our experience —good, bad, scary, hopeful —count for something bigger than just our little family. It felt like God chose us to be Nik’s parents for a reason and God brought Nik to this world in the manner he did for a reason. I am not a hugely religious person but I do believe there is a reason for things that we may not always know or understand. So to know that my son —my family— is making a positive difference in the life of another child, another family… Well, it feels overwhelmingly good and like a big responsibility all at once.

I try to live and parent in ways that make me worthy of that gift. Some days I succeed more than others, but each day brings a new opportunity.

Today, life is sweet.

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

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

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

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

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

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

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

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

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

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

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

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

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