Archive for the ‘whining. self-pity’ Category

Apparently, mine does…again. UGH.

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ARGH!!!! I just knew better than to tempt the parenting gods. In my last post I bragged about the loss of a doctor and going to bed early. Sure…

I was up most of the night with Nik and another “mystery ailment.” There’s been something weird going on with one of his ears but it’s not an infection. Ever since Nik had his tubes placed (last September), he’s had some kind of weird sensory thing that wakes him from a sound sleep and causes him extreme discomfort. I know it’s the ear because we’ve had darned near every conceivable test to rule out everything from reflux to seizures to tumors. I am not exaggerating. I am convinced the doctor’s must think “Hmmm, classic Munchhausen by Proxy here.” But there really IS something wrong!

Lately, Nik’s been rubbing absolutely everything on his right ear…and ONLY his right ear. If he’s in the stroller and we’re in a store where a stranger is innocently shopping, minding their own business, Nik will reach out and grab hold of their shirt, pants, purse, bag, whatever and rub it against his right ear. He is constantly flicking at the back of the ear (actually just a tad behind the ear) and has managed to abrade the skin something terrible. We’ve seen all kinds of doctors and tried creams, antibiotics, you name it. Nothing works.

The worst part is that it does not seem to be a joyful, comforting sensation to Nik — quite the opposite. Sometimes he flicks and rubs so hard then gets very agitated and cries or whimpers. It is heartbreaking. Last night, he not only did those things but he arched and flailed and hit his head…something he hasn’t done a very long time. Clearly he is trying to communicate something to us about what’s going on but we haven’t yet debugged it.

The only thing I can think of is that this started up AFTER he got the tubes. That was when all the weird nocturnal waking and arching, screaming, head hitting began. That is when the ear flicking began in earnest. Before that, Nik only flicked his ears when he was sick; that used to be a clear indication that an ear infection was brewing. Somewhere along the line, the rules changed.

Nik never really had much trouble with his right ear; it was always the left that was infected or we couldn’t get a clear hearing test (leading to his temporary classification as Deaf-Blind this past school year). The right ear…”practically perfect in every way,” as Mary Poppins would say. I wonder if there’s some sort of auditory or nerve sensation that Nik now has from the tube in his right ear and if the flicking and head banging is his attempt at making it go away. I am tempted to ask the ENT to remove the tube from the right ear and see if it helps.

I wish he could talk and tell me what it is. This not being able to figure it out and having to watch him suffer is painful for me. I can only begin to imagine how it is for Nik.

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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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(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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Well, here goes a mini-brain dump. (Um, that refers to the size of the “dump” not the brain, ok?!)

Good weekend. Long, but good. Niksdad had to work all weekend so I felt pretty much like a single mother most of the time. We did get to go to a friend’s BBQ yesterday evening. What an experience. It was the first time I’ve ever been in a situation with Nik where I’ve been pretty much expected to make small talk and, if necessary, explain Nik to strangers. It was extremely uncomfortable for me. At the park, I can always pretend I don’t see the other parents or can distract myself with some interaction with Nik. Not so at the party.

Trying to figure out where to draw that hazy, shifting line between telling Nik’s amazing story and revealing too much information is so difficult for me. I am so proud of my amazing little fighter and how far he’s come. I am also aware that not everyone in the world either cares (screw ’em!) or understands, or wants to. It was challenging to watch someone’s 11-month old daughter not only toddling around on her own but eating food by herself and saying several words.

I got a lot of sympathetic kudos from other women, mostly of my mother’s generation (though not family). “Oh, you are obviously such a good mother. You must be exhausted. You must have your hands full with that one.” And things of that nature. I nearly spit out my drink when one woman took my hand and pressed it between her palms and said quite earnestly, “You have secured your place in the Kingdom of Heaven!” I mean, how the hell do you handle all those well-intentioned people who just don’t have a stinkin’ clue!?

Yeah, Nik had a couple of major coping challenges but, overall, he did pretty well. Especially considering that it was a loud, large gathering and there was nowhere for him to safely get down and scoot and crawl and cruise. Thank God for my parents. Nanny (my mother) took Nik for a walk down the street and back to give him some quiet and me a chance to eat and have a modicum of adult conversation —which unfortunately consisted of the aforementioned well-intentioned biddies’ “kudos.”

Took Nik to the park this morning, before Niksdad had to go to work. Nik did lots of climbing and sliding down the big-kid tube slides —feet first and on his tummy. What a ham that kid can be. The park was very quiet this morning and it felt peaceful. I really needed that mental respite before gearing up for the balance of the day alone with Nik. (It gets exhausting after three days straight.)

While we were in the toddler area, letting Nik crawl and cruise and roll around to his heart’s content, a little boy came over to play with Nik. The other child was a fairly good-sized two year old; he was bigger than Nik (who is slightly small for his age) and far more verbal, mobile, agile, you name it. His mom was watching and telling him to be careful and not run over the other Nik. I laughed and told her they were fine. I could tell she wanted to ask some questions about Nik but wasn’t sure if she would offend us. I offered up the fact that Nik doesn’t yet walk or talk and isn’t always aware of other kids playing around him and left it at that. She was very protective of Nik and I think a little worried that her kid was going to hurt him as he barreled down the toddler slide and ran into Nik with his feet. Nik was unphased.

We let them manage their own encounter; it was fascinating to watch. As the mother was telling me that her son, Jordan, was a middle child and played kind of rough and tumble with his bigger brother, Niksdad and I watched him moderate his actions to match Nik’s. Where Jordan had, at first, been running and sliding he was now cruising and crawling alongside Nik. When Nik lay down on the warm decking and began to rock his head back and forth (rubbing, really), Jordan did the same. Nik would stop and look at Jordan and then sit up and move on. Jordan followed. They had this wordless ballet going between them and it was astounding to watch.

Whereas last time Nik was oblivious to the other children playing near him, today he was completely aware of his silent playmate. I felt hopeful about progress Nik seems to be making in awareness of his surroundings more and more lately.

On another note, I am finally getting around to reading some of the books that have been recommended on other blogs. I started with Paul Collins’ Not Even Wrong which positively captivated me. His narrative style, intertwined with the whole wild boy (and other) research, really connected to something deep in me that I am not sure I can yet identify. I found myself moved to tears often. I found myself thinking that this would be such a fabulous novel; in fact, in my pre-Nik life, I may have read it from that vantage point. Collins’ descriptions of some o his interactions with Morgan were so poignantly reminiscent of mine with Nik. Not the actual content, of course —Nik has neither language nor any apparent savant-like characteristics —but the tenor of emotions so raw and real. I want to know more about Morgan and how their story unfolds.

I’ve also been reading Ellen Notbohm’s Ten Things Every Child With Autism Wishes You Knew. If I thought she’d really read it, I’d love to send a copy to my mother-in-law. Yeah, I’m feeling pretty resentful toward her at the moment. Never mind the history of her attitude toward Nik —which is so complicated and convoluted, despite her apparent love for him. I thought we’d made such great progress in her acceptance of Nik exactly as he is and where is. LONG STORY SHORT —M-I-L has some health problems which make long travel very difficult for her. So, she’s (they’ve…my F-I-L, too) opted to drive 12 hours to a family wedding (her great-neice’s) without any plans to stop to see Nik. We only live THREE HOURS FROM HER. She smokes like a fiend and we cannot go to her house because of Nik’s chronic lung disease, so Niksgrandma & Niksgrandpa need to come to us.

They haven’t seen Nik in a year. Got miffed when we returned their combo birthday/Christmas gift because it was UNSAFE. (This, in spite of the fact that we provided a long list of suggestions along with a thumbnail of where Nik was developmentally at the time.) But, don’t get me started or I’ll have my own meltdown!

Anyway, due to MIL’s health, I am certain that they will make it to the wedding (come hell of high water, because GOD FORBID the family thinks they don’t care!) but by the time they are heading home, she will be in too much pain that they have to chug on through without stopping.

I know I need to let it go but, goddammit, I can’t! This is the same woman who refused to even acknowledge Nik’s existence to any of her friends or family members until we sent out birth announcements when he was 4 1/2 months old and still in the NICU! She was more upset that we hadn’t consulted with her before we sent them! ARGH!!!!!! (For clarity and context here, Niksdad shares my feelings about this so it’s not like I am MIL-bashing…exactly.)

Ok, I’m doing some deep, slow breathing now to regroup…Well, that was an unexpected little explosion from yours truly. So much for not having that meltdown!

I feel like I need to end on a positive note because that’s what I have always done my entire life —apologize for my strong emotions. Not today. I’m tired of playing “nice.” Maybe I’m just tired? Nik takes so much work somedays. Between the need for structure in general, the need for a strict schedule in particular regarding his tube feedings and medications, and the equipment I need to schlep around to go places — it’s challenging to be able to get out and do “normal” things. Tonight, for example, my sister invited us over to swim and have dinner. We went but it was stressful. Changes of clothes, diapers, toys, stroller, feeding equipment, food for the off chance that Nik might deign to eat by mouth tonight (he did —2 ounces of fruit!). Then there’s the hyper-vigilance which ensues the moment we walk in the door. Lots of doors, stairs, unguarded cabinets, the dog dish full of water, the large pony-sized dog, the swimming pool, the brick steps, the concrete patio with the wrought iron chairs (two if which Nik managed to pull over —nearly on top of himself), etc. All become potential hazards which I must steer Nik away from. Yeah, a nice relaxing time in the pool…did I mention Nik screamed most of the time until I figured out he hates his new floatation vest? Or that he had a mild sezure and whacked his head on the concrete patio? Yeah, that was a blast…NOT. I don’t know how single mothers do it! Honest to God! I think I got drunk on my half glass of wine because I was chugging down great gulps between sprints toward Nik and some imminent danger. Hic!

Wow, I am really feeling sorry for myself tonight, aren’t I? Yuck. Well, that’s life. Guess I’d better get a good night’s sleep tonight because tomorrow I have to suck it up and do it all over again! Sigh…where’s a fairy godmother when you need her?

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