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Archive for the ‘fun’ Category

Fun (Updated 8/29/07)

Lest you think the humans are the only crazy ones in our household…This is Pandora.

Aptly named, she thinks everything is a source of wonder to be explored and has gotten into trouble by opening many a box!

For those of you wondering how this particular story ends…she is an indoor only cat. The salamander lived to tease another day.

However, there was the time last summer when one got into our family room…Niksdad tells me it was a pretty funny sight and he had to rescue ol’ Sal.

She’s an indoor cat, but she’s a helluva huntress!

UPDATE 8/29/07 — I love the internet! Thanks to Melissa, I learned something new! The creature in the picture above is not a salamander; it is a skink. Who knew?? (Well, obviously Melissa did. I’m guessing it has something to do with an interest of her son, Conor, perhaps?). Not only is it a skink, it’s a young one! Whatever, my cat sure thinks it looks like one tasty treat; I’ve read confliciting reports that skinks can be toxic to cats or that they are not. No matter, Pandora will remain “skinkless” as long as I have anything to say about it!

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As my little hometown grows up and becomes overrun with new housing developments and shopping centers, it is becoming increasingly rare to find celebrations of the old ways, the agrarian culture, and the simpler times. Sigh. As Rascal Flatts sings, “I miss Mayberry…”

One of the neighboring towns hosted their annual peach festival this weekend to commemorate the town’s once rich agricultural history. You see, Delaware was one of the top peach producing states in the union until the dreaded peach blight of eighteen-something. Seriously. Nonetheless, there are a few large farms around doing a booming business; one of them always hosts a huge customer appreciation event complete with music, hayrides, a small petting zoo, and free peach ice cream cones all day long.

So, Saturday morning found NiksFamily heading out in the sweltering, muggy air to embark upon an adventure —to expand our cultural horizons. It was, I think, the start of a new family tradition. We ventured into the town center —all two blocks of it —to check out the official peach festival (which is separate from the event hosted by the orchard). The town’s single train station —long ago converted to the town hall —doubled as the main stage on Saturday. Heck, it was the only stage!

We wandered the street along the edge of the railroad tracks, perusing the offerings of myriad vendors. The local high school drum corps playing in the background, Niksdad and I held hands as we wandered and sweat. Nik wanted to walk a bit so we took turns holding his hand for support. When the heat became too much to bear, Niksdad hoisted Nik onto his shoulders. Now, I have been to many “street fairs” when I lived in NYC and near San Francisco —the kinds with a gazillion different vendors and umpty-ump musical acts (some big names) and an air of highly organized chaos about them. Saturday’s festival was nothing like it.

There were tables of crafts and clothing, jewelry and hand-sewn handbags, potpourri and wood art. And the baked goods. Oh, the baked goods. None of the slick, mass produced bakery fare here. No sir, each and every pie, cookie, loaf of bread and you-name-it —all home baked by the ladies of the XYZ church auxiliary. Such a fierce competition between them, too! I found myself getting teary as we wandered; I suppose I could claim it was from the heat or the sun in my eyes. The truth is, I felt an odd connection to another time; I felt nostalgic for a life I’ve never known but always dreamed about. I felt like time must have stood still for this one day, just for me. And that was just the beginning…

After melting under the morning sun, we got in the car and headed up the road to the farm for the customer appreciation event. Now, my mother swears she use to take me to this farm as a kid —to pick out pumpkins; I have no recollection of this whatsoever. I am sure I would have remembered such a beautiful farmstead; their event was so much nicer than the festival we had just left. There were huge tents —set up under gigantic shade trees which have to date back well over 150 years —with volunteers serving up refreshing ice cream full of thick chunks of yummy peaches. Mmmmm…There were hayride tours of the orchards, a small petting zoo —kind of a rag-tag collection of family pets and farm animals —and a musician playing wonderful background music that you could sing along to. Perfect.

I don’t think words can do justice to the fun we had. Nik wanted to walk around holding onto one of our hands or he wanted to scoot along on the ground. Knowing how much Nik thinks he wants to eat versus how much he actually does (rather, DOESN’T) eat, I decided to see if Nik would deign to take a lick from my ice cream cone. He’s never really cared for ice cream before; it’s too cold and too wet for his liking.

Apparently, the secret is all in the cone! Not only did Nik enjoy the ice cream, he wanted to have his very own cone and “yelled” at me when I tried to share with him. He actually looked me in the eye, pushed my hand away and said “Ng, ng, ng, ng!” which is how he says “no.” Nik didn’t really want the whole cone, he just wanted the control. But the fact that he ate numerous bites —licks, really —of peach ice cream was pretty monumental. Especially because he sat on the ground next to me the whole time and even tried to feed me a time or two. New stuff. A big deal.

Ice cream finished, we wandered a bit and ran into some people we know including one of the para’s from summer school. She was pleased to see Nik; he actually acknowledged her presence and held her hand for a moment. It was a sweet moment for all of us.

From there, we found the petting zoo. Nik didn’t seem to really recognize that there were animals there; perhaps it is because he hasn’t had much exposure up to this point? There was a two-day old calf, some baby bunnies, a couple of pygmy goats, and a dog. An interesting collection to be sure, but it was just enough to captivate the smaller kids. Once Niksdad helped him pet the calf, Nik seemed to catch on a bit.

By lunchtime, it was clear that Nik was beginning to fade. We gathered up our dirty little ragamuffin —with his dusty shorts and his dirt-smeared face he looked like the most typical three and a half year old boy —and began to head to the car. When I heard the song that was paying, I had to stop and dance with Nik. How could I possibly resist the lure of “American Pie?” I scooped Nik up and whirled him around as I sang to him —and he looked me in the eyes, threw his little head back and laughed! The more I sang and whirled, the more he looked right at me, smiling and laughing and clapping his hands. I could have died on the spot and gone with a smile on my face!

Yes, definitely an occasion to be repeated every year!

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In case anyone’s been worrying about my absence over the past few days —all is well in Niksworld. In fact, you could almost say it’s been idyllic. It is kind of amazing —when I let myself remember to do it — that when I put something out to the universe, God, my subconscious —or whatever one believes in— things do have an uncanny way of unfolding.

My recent posts about my brief existential crisis, and the outpouring of support and warmth from so many readers, really helped to crack me open a bit. I don’t think I even realized how guarded I was being —with my time, my energy, and especially with my heart. Perhaps it was simply fatigue, or perhaps it was a phase of a larger, natural cycle which is occurring in my life and I couldn’t see it. Whatever it was, it feels like it’s on the upswing now!

These past few days have been absolutely phenomenal in every single way I could possibly describe; perhaps I should go buy lottery tickets tonight? (Only half kidding…) I’m not even sure where to begin to relate all the things that have happened over the past week; forgive me if I ramble in a somewhat disjointed fashion from topic to topic.

First of all, things with Niksdad have been peaceful and relaxing. We’ve spent some great time together working on some household things both big and small, catching up on a bit of sleep, and simply spending time together both with and without Nik. My sixteen year old niece even volunteered to babysit last night — FOR FREE! Yes, we had a date! An honest to goodness date.

Niksdad shaved and I even wore makeup and did my hair! Not that we don’t do those things on a fairly regular basis —just not always for each other or with such intention. We got tickets to see The Bourne Ultimatum and planned on dinner before hand. Nothing fancy because of the time constraints, but it was out and it was without Nik! I won’t spoil the movie for anyone but I can tell you that we loved it! From the minute it started, we were clutching each other (well, maybe me a little more than him and maybe him for different reasons?) and the adrenaline was pumping. AWESOME. Oh, yeah, Matt Damon is sexy, too! Anyway, it was a wonderful night and it felt “normal.” I don’t mean normal in the sense that our daily lives feel abnormal; I mean “like the rest of the world” kind of normal. As in, “Ho hum, isn’t this so UN-extraordinary that it’s almost boring” kind of normal. We didn’t even talk about Nik!

It’s been sort of like that all week, though; like the spark has been rekindled a bit and the subtler expressions of affection are surfacing more. Even when we are together as a family —which we’ve been a lot this week —the feeling is present. We haven’t made it to the beach but we have gone to the pool several times. Friday we went to the “Can Do” playground before going to the hospital for appointments, and Saturday we went to the peach festival. (Each of the latter two events merits its own post…coming soon!) Niksdad even turned down a chance to work this weekend “Just because;” it felt great to have him put us first again.

Like I said, it’s been a full week for us here. Nik, too, has been having his own momentous happenings. The kind of things that parents of “typical” kids might miss because they seem so “normal,” so expected.

We had someone come to the house this week to do an evaluation of Nik’s eligibility for services through the Division for the Visually Impaired now that he has been discharged from the “Deaf-Blind” program. When the woman, Ms. S, arrived Nik was playing by himself in the family room. As soon as Ms. S. walked into the room, Nik’s attention was riveted. He actually stopped playing, scooted over to her and pulled himself to stand using her legs. He looked up at her with a big smile and reached for her hands to play “clap hands” as he does with Nanny. Ms. S was a good sport and played along. I was surprised to see Nik take an active interest in someone besides the little boy in the mirror! What happened next floored me.

Nik, still standing —he is getting a bit steadier with each passing day —reached out to take Ms. S’s hand in his and led her to the sofa to sit down. Such the gracious host! He then proceeded to climb up on the sofa and sit next to her to continue their play. Ms. S did not realize it but she had been given a signal honor! Nik has never done that before.

That same afternoon, when we went to the pool, Nik was very aware of other children nearby as he cruised along the edge of the toddler pool or sat splashing happily in the water. Though he didn’t actively seek them out, he watched and seemed to perk up when one approached him. He even flirted with another mother! I wonder if he could sense her friendly curiosity about this happy-go-lucky child splashing and singing.

She wasn’t simply another mother at the swings; this woman was —is —a kindred spirit. She proudly introduced her beautiful 10 month old son with Down Syndrome and we bonded quickly. We shared an understanding that the path we have been placed upon in mothering our different children is not one easily accepted and understood in our smallish community. We lamented about the school system and some other shared frustrations, but mostly we talked about the special joys of our children and the moments we never want to take for granted. The whole time, Nikolas climbed all over this woman, playing with her sunglasses, her son’s float, her daughter’s goggles. The woman not only did not mind but encouraged him and praised him for being so smart and engaging. It felt like the hand of God had reached down to touch my heart. I didn’t get the woman’s name or phone number and I may never see her again, but I will remember her for a long, long time.

Thursday was a very eventful day. We started the day with a four hour eye appointment —ugh! I had a session with my trainer at the Y so Niksdad took Nik to the eye clinic. It’s not an ideal set up; you have to arrive by a certain time and be prepared to wait with lots of other families. Still, the doctor is wonderful and she’s the same one we would see if we drove an hour each way to her private office. So we trade off the hours in the car for the hours in an office; at least in the office, Nik is able to move around and engage with his environment in a way he cannot in back seat of the car. Anyway, it turns out that Nik did great at the clinic —in spite of having to be restrained to have his eyes dilated. He was very social and incredibly patient!

That afternoon, after the already too long eye appointment and no nap, Nik had OT and PT. I worried that it would be too much and that Nik would simply fall apart. Oh contraire! Nik probably had the best session ever. Ever. As Miss D, the OT, brushed Nik and sang silly songs to distract him, Nik gazed adoringly at her! I was rather jealous, I must confess! Nik was putty in her hands as she did joint compressions and deep pressure. When Miss D put Nik in the ball pit, he not only grinned but he initiated a game of “you hand me the ball and I’ll throw it out of the pit and laugh myself silly” with her. Oh, the stabbing pain in my heart as I watched my son flirt and giggle and interact with Miss D; I don’t know if it was from envy or pride but it ached.

As if that weren’t enough, the entire session was filled with my exclamations of, “Miss D, he’s never done that before!” Even Miss D was surprised at how well Nik did with the swinging, the ball pit, crawling through the tube, pushing the cart, etc. He even let her put him in the big yellow gigaball —TWICE —without complaining. He hates the texture of smooth, sticky, inflatable plastic but he did it for her! He even graced her with a few independent steps. I am not sure if I want to hurt Miss D or adopt her! It was amazing, simply amazing.

Miss D handed Nik off to Miss T, the PT, for their session. It wasn’t quite stellar but Nik did some pretty good stuff. I can tell that he kind of falls apart after about 15 minutes with Miss T. I cant’ tell yet if it’s something about the dynamic with Miss T or if Nik is simply mentally fatigued by then. I think it’s the latter; there’s nothing about Miss T that Nik seems to object to —except for the fact that she’s not Miss D!

In the midst of all this wonderful-ness, I got a call from my husband telling me that my father had been in a car accident; he didn’t know more but was on his way to the scene with my mother. My heart lurched and my heart raced at the idea of my Daddy, Nik’s Granddaddy, in some mangled, broken state. I calmly told Miss T that I might need to go; Niksdad was going to call me with more information as soon as he got there. DAD IS FINE. Whew! To make along story short, he misjudged some distance for a turn and got hit broadside by a truck.

God must not want my Dad yet, because the circumstances of the accident are pretty freakin’ miraculous. The trucker was near his home and knew that it was a bad stretch of road so he wasn’t going very fast (about 40) —the local cops and EMS call the area “Helicopter Corner” because they are always having to Life Flight someone out of there. Amazingly, the point of impact was exactly on the door post behind the driver’s door. Another four to six inches toward the front and it would have been a very different outcome. Dad, we think, must not have seen the truck until just before impact. That is the only way I can explain the fact that he walked away from a totaled car without so much as a single twinge of discomfort. None. He’s been checked over from head to toe by doctors and there is no sign of any injury whatsoever —unless you count the wounded pride. 3 days later and Dad still has NO PAIN. Amazing!

So we’re living life in the fast lane here (ha ha). Big stuff. Good stuff. And it just keeps coming! I feel like I should put up a sign on my blog that says “Watch This Space” as I have more to share! Niksdad is working tomorrow night (yeah, his schedule got changed again) so I’ll have more time to write.

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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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Well, my parents were not able to babysit last night so we didn’t have our date night. Harrumph! We did manage to rent a movie and get some “down” time that wasn’t about studying, cleaning, doctor’s appointments or taking care of Nik. We got a commitment from my folks for this coming Friday night, though, so I think we can muddle through another week without forgetting each other’s name!
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Today has been a terribly stormy day with thunder and lightning and driving rain. Though, why on earth it’s called driving rain is utterly beyond me; you can’t see a darned thing to drive when it rains that hard! Our well laid plans —to take Nik to the park in the morning then the pool in the afternoon —fizzled out big time. We took Nik to XBos instead.

Overall, he did really well. He cruised and climbed and slid with both Mommy and Daddy a few times. He seemed to be really enjoying himself until Daddy took him up into the structure one last time to try a different slide. We still don’t know what it was —the noise, the lights, being tired, or maybe fear — that made Nik completely freak out midway through the trek. I was waiting on the ground level while Niksdad took Nik up through the structure. They were having a perfectly good time until somewhere near the top.

I could see Nik fighting against going up the platforms as they got closer to the “big” slide (which Nik loved when he went down with Daddy a little while before). Daddy would help him up and then Nik would climb right back down. This went on a few times and then Nik just went ballistic. He fell to the floor screaming, crying, kicking, hitting his head and biting his hand. To say it was awful would be an understatement; I know you all fully understand what I am describing.

Poor Niksdad made the mistake of trying to restrain Nik (he was in a relatively safe area and was not in danger of falling) and got a head-butt in the nose as Nik thrashed and reared into him. I felt helpless and frustrated. I could see what Niksdad was trying wasn’t working and I didn’t want to tell him so in such a public way. I simply told him to keep Nik safe and I was on my way up. I don’t think I’ve ever climbed and clambered so fast in my life.

When I got to Nik he was still frantically wild —very much out of control. I wrapped my arms around him and pulled him into my lap —receiving my own head-butt in the neck for my efforts. My objective wasn’t to restrain him but to stay with him (thinking very much of Kristina’s post about being Zen with Charlie) and to let him know he was OK. I just told him over and over that he was ok and that no one was going to make him do anything he didn’t want to do.

As I spoke very calmly to him, I began doing some joint compressions on his hands, arms and shoulders and gently pressing his hands together so he could (maybe?) get some calming input. I started to rock forward and back as I held him and hooked my arms under his knees, hugging them close to his chest. I felt his body begin to ease and the crying became more of a whimper. I scooped him up in my arms and asked Niksdad to go down first so I could hand Nik down to him as we went from level to level. At one point, I simply carried him until we got all the way down. By the time we got to the main floor, Nik was nearly recovered.

We took him into the toddler play area —with all the little Tumble Forms type stuff —Nik was back to normal in minutes. We decided it was time to go and headed back out in the rain. By the time we got on the road, Nik was singing and smiling as if nothing had happened.

I felt so awful for Niksdad. One, because Nik hit him so hard that he nearly broke his nose. Two, he didn’t know how to help when Nik really needed him. I don’t mean that in a judgmental way at all; rather, that we are still fumbling our way around and trying to figure out what works. Niksdad is still learning that restraint makes it worse. I think I get it more readily because I am the one that is usually with Nik at all of the “awful” appointments where he needs to be held down for something (like the g-tube stuff or EEG’s). Since I am not strong enough to hold Nik as he gets bigger, I have had to find alternatives.

The only reason I thought of trying the joint compression is because of Miss D, Nik’s new OT. I’ve watched what she’s done with him the two times we’ve seen her; it isn’t a magic cure at all, but it definitely helps Nik maintain focus and calm. I’ve been trying it at home over the weekend but haven’t been able to tell if it helps. I think I can safely say, after this morning, that it does.

Nik ended up having lunch and taking a nice nap while Niksdad got to study for his final exam tomorrow and I got out of the house for a short break. All is well and Nik is now sound asleep for the night. Let’s hope…

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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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Jennifer from Pinwheels has bestowed upon me a great honor —a Blogger Reflection Award. The award “should make you reflect on five bloggers who have been an encouragement, a source of love, impacted you in some way, and have been a Godly example to you. Five Bloggers who when you reflect on them you get a sense of pride and joy… of knowing them and being blessed by them.”

Then:
1. Copy this post.
2. Reflect on five bloggers and write a least a paragraph about each one.
3. Make sure you link this post so others can read it and the rules.
4. Go leave your chosen bloggers a comment and let them know they’ve been given the award.
5. Put the award icon on your site.

To steal Jennifer’s words (because she writes so eloquently that I want to weep sometimes…and often do!) —”These are my favorite sorts of blogging tags, because it’s full of kindness and good will. ” I agree; blogs that make me feel deeply often make me think deeply as well.

Without further ado, here are my choices–five blogs that make me think and feel inspired:

1. Life with Joey. Joey’s mom has taught me lots in the short time I’ve been blogging. She has a groundedness about her that is inspiring. Yet, she also has a strong sense of humor and is a fierce advocate for her sons —both of them, not just her autistic son. Through her, I’ve learned some practical tips, gained some new perspective, and realized I am not at all alone in this journey of parenting a child with special needs which include autism.

2. From Here to There and Back. I’ve tagged Kristen several times for many things. I can’t help it. I’m not sure how to describe it other than this: It feels like I have known her a very long time —maybe from a past life (if you believe in that)? Not that we know lots about each other, more that our spirits have somehow connected. She always has words of wisdom and encouragement and manges to reach out to see how I am even when it sounds like she’s in the midst of her own challenges.

3. Kristina at Autism Vox has been an inspiration to me. Through her archives of posts about her amazing son Charlie, and now through her daily posts about all sorts of things relating to autism, she makes me think about things I might not otherwise even notice —let alone actively consider how I feel or what I think. She has become my go-to link for quick sources of information about autism research, education, news, debate (of which there is always plenty!), and reflections on parenting children on the spectrum. I don’t know how she manages to do it all, but I am very grateful she does.

4. McEwen at Whitterer on Autism has been such a wonderful gift for me. She has her hands more than full with a houseful of kids, she straddles the line between Yank and Brit (with great translations for those of us who don’t quite understand some of the terms she might use), and she does it all with the damnedest sense of humor. God, the woman should be doing stand-up comedy, I swear! Whenever I need a good laugh (and the occasional tear), I stop by her site for a cuppa. Seriously, she inspires me with her ability to maintain a sense of absurdist humor in the midst of what can be very stressful. It’s a gift, a real gift.

5. Last, but definitely not least, is Sweet/Salty Kate. I found her site through Jennifer (Pinwheels) and have been voraciously reading each and every post. I can relate to so much of what she writes. I don’t really expect her to participate in this meme/award right now —she’s more than got her hands full right now. But I wanted to share her story and her incredible talent with all my readers. She is —to me—strength, dignity, and grace personified. Check her out; you won’t be sorry. (Make sure you read some of the recent archives, too.)

Thank you Jennifer, not only for tagging me and allowing me the chance to think about these bloggers, and their gifts, but for the gift of your strength, wisdom, and heart.

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