Who’s running the zoo?

I went to the animal fair.
The birds and the beasts were there.
The big baboon, by the light of the moon was combing his auburn hair.
The monkey he got drunk and fell on the elephant’s trunk.
The elephant sneezed and fell on his knees
And that was the end of the monk!

The Animal Fair (old minstrel song, origin unknown)

Well, today I feel like the elephant has knelt upon my chest as I fight this summer cold that Nik was so kind as to pass along to me. To add insult to injury (mine, lest that be in question at this point), Nik is no longer sleeping through the night. Well, sort of…

Nik has begun to “talk” and cry in his sleep. Not enough to wake him…just me! I find myself waking multiple times in the wee hours and stumbling, eyes half closed, to Nik’s door to wait for the escalation of cries that doesn’t come. I stumble back to bed with a not-so-silent prayer, “Please God, let him sleep throught he night quietly!?”

Alas, that prayer has gone unanswered lately. No, Nik is now actively waking at roughly 3:00 or 4:00 each morning and in the mood for serious play. I stumble to his room to put a toy in the crib. As I leave his room again, I hope in vain that he will get bored and go back to sleep. He does…around 5:00 a.m., a mere half hour before Niksdad’s alarm drags me from my newfound slumber.

Now, all of this would be mildly tolerable were it not for the fact that Niksdad is off to work most of these past few days leaving me to handle the monkey. Yes, the monkey. Pictorial evidence follows:

Nik climbs out of his chair (left); Nik cruises around the scene of his latest carnage (right)

And he looks so innocent, does he not?!

If this keeps up much longer, I will likely turn into a raving maniac. Looking at the calendar of Nik’s appointments and Niksdad’s school and work schedules, I think I will be able to sleep on Thursday next. So if I ramble on in my comments on other blogs, have pity on a poor mother?

(On a serious note: I am complaining tongue in cheek, but I am also exalting in how very, very far my little monkey has come! One year ago, Nik wouldn’t even bear weight on his legs. Now? Motion, constant motion!)

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Why put off ’til tomorrow…?

I am procrastinating —one of my favorite and most accomplished pastimes. My head is swimming with non-IEP details and paranoia about tomorrow’s meeting. Niksdad didn’t help last night when he started getting snippy about the school nurse, Nurse J, and whether she was going to challenge every last little thing we bring to the table. Probably. But I’m not going there just now, thank you. Instead, I’ve been perusing all my bookmarked blogger friends and discovering some new ones, too. Hmmm, that reminds me that I really need to update my links on my page to reflect ALL the wonderful blogs I read, not just the first ones which drew me into this fabulous world.
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I’ve been thinking a lot this morning about the future and about friends —again. I’ve written about some friends here and here, but today I have different one on my mind. Possibly my dearest friend in the entire world, C. First some background —C, Calvin, and I all lived together in our “salad days” in Boston many years ago. Well, actually, it was in Melrose and we really didn’t eat much salad. Lots of macaroni and cheese and iced coffee as I recall. Anyway, we were thick as thieves but different as night from day; there was a deep bond and nearly psychic connection between us but our paths in life were vastly divergent.

C was the former-beauty-queen-turned-banker (really, she participated in pageants in her home state as a teen. And she is still beautiful.), Calvin the spitfire, gamine with a quick wit and talent for writing (especially plays for stage and screen; she had a tremendous knack for storytelling and great dialogue). I was the musician who wanted to be an educator. Somehow, life took us in directions we never quite envisioned and we went our separate ways to marriages, new jobs, and new efforts to reinvent ourselves.

C and I have always been close. Our birthdays fall in close proximity, our mothers shared the same birthday (though her wonderful mother passed away some years ago now), C and her husband, Doc, even share the same anniversary as my parents. Their son shares my husband’s birthday. C even had a child with special needs; Angelic little N had a very rare genetic anomaly which proved to be fatal and she died at the age of 18 months after a very valiant fight. The experience brought dear C to her knees. Remarkably, she found the grace and strength to keep moving and living. I admire her so much; I’m not even sure she knows it.

It has been many years since C’s angel passed away but she is with me constantly. I sometimes talk to Nik in the quiet of evening and name the angels I believe are watching over him; N is always one of them.

I haven’t seen C in a while but she and Doc came to town yesterday —passing through on their way home from a conference in Maine. They could have flown home to VA but it was important enough to them that they get to see us that they rented a car and drove down and spent the night in town. Doc has never met Nik as he was on a National Guard assignment the year we had Nik’s second birthday party and C came alone. Yesterday was special for all of us.

C is still a financial whiz and very successful; Doc is (duh!) a doctor and also very successful. They have a nearly idyllic life with their handsome son (who is now turning into a “tween” heart breaker, I hear!), their large home on many acres in the countryside, family vacations, summer camp, etc. One could say they are living a “charmed” life —depending on your perspective, I suppose. They live each day with the memory of their beautiful daughter and the terrible loss. They use it to fuel them to doing good things for not only themselves but for others. They are wonderful people and I love them dearly.

We had dinner with C and Doc last night; Nik was asleep and my mother came to babysit. It was a beautiful evening with good food, wine, and conversation with intelligent, funny, caring adults who understand what our lives are like in every possible way. The joy and fear, the grief and pain, the hope, the stress, the sleepless nights, the strain on relationships —warts and all.

I’m tap dancing around what I want to say because it’s raw and overwhelming and it’s been on my mind for so long. Deep breath…

Last night we asked them to be Nik’s guardians should something happen to us. It was emotional and scary and so uncomfortable. I mean, who are we to ask them to take on the burden of a child who may need support and services for the rest of his life? A child who has significant medical needs and may spend more time in the hospital where their angel fought so valiantly. How could I ask them to risk the pain of loving and losing another child? For I have no doubt whatsoever that Nik would be utterly loved by them and by their son, D.

Granted, it’s not like we are planning on handing Nik over and saying “Here you go, please raise our son for us!” Of course not; we’re talking in case of catastrophic events here. None the less, it felt strange.

I told C that the reason we wanted them to consider this is that we felt that they would not only be able to care for Nik financially (well, one does need to be practical here), but that they would try to instill in Nik a strong sense of ethics and the value of working hard for one’s rewards. They have what I would call relatively mainstream family values and place a high premium on intellect and creativity. I don’t’ mean book-learning, but one’s innate intellect; I think they would value Nik for exactly who he is without trying to make him fit an ideal of who he “should” be. And they would do it all joyfully and without an ounce of pity for “poor Nikolas.” I’m not sure I can say that about many other people I know.

C and Doc obviously need to think about it and talk it over; it is, after all, a tremendous responsibility. I hope they can find their way to “yes.” I simply cannot see Nik being raised by either of my sisters, nor by Niksdad’s sister. I won’t go into the reasons here but will say that I don’t think any of them would put Nik’s best interests first if push came to shove and they had to choose between Nik and themselves. I think C and Doc could, would do that; they’ve already proven it with their own children.

Kristina recently wrote about doing “the right thing” and planning for our children’s futures. It is something that no parent ever really wants to have to think about yet it is crucial. Like my son’s IEP is the foundation of his educational future —and his education is the foundation for his future life —I must plan for the eventuality of his living life without myself or Niksdad in the picture. If that day should come sooner than anyone anticipates, I will feel like I have done my utmost to assure that his future is as bright, as rich, and as full of promise as it can possibly be.

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More Good Stuff

We have a certain pre-bedtime routine we follow with Nik. Jammies followed by some play time then brushing teeth (with sips of water, too) and (Mommy) singing our bedtime song. Then it’s off to bed holding Daddy’s hands as he walks up the stairs. Niksdad and I do this together every night that Niksdad isn’t working. The moment we are done with the special song, Nik pops up off my lap and races to the kitchen gate to grab Daddy’s hand. It’s very sweet.

Most nights, Nik cannot sit still for the whole bedtime song and scoots away before I’m halfway through. Tonight, after brushing teeth and having one sip of water, I offered Nik more water. He kept pushing the cup away but would then scoot further into my lap and lean against me. I’d offer the cup, he’d push and lean. Duh…took me a minute to figure out he was trying to tell me he was ready for “the song!” He rested his head against my breast and snuggled back in my arms as I sang in a choked voice. Three times through. Yeah, I’m a big ol’ mushball when he does stuff like that — it’s so uncommon for him but I see him starting to do more and more with each passing day.

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Be the change

A recent post on Autism Vox, titled, Parents against Parents…, brings to light a very disturbing situation in the Cherry Hill, NJ public school system. From reading through the numerous comments, it is apparent that this is truly hot button issue. I hope you’ll give it a read and share your thoughts.

I suppose I should be happy that my son is in a special needs school in our district and that the issue of 1:1 paraprofessional support in the general education setting is not on our radar screen; it may be at some point in the future but not for a few years.

Meanwhile, I have actually had some pretty good experiences with our school; that’s not something I expected to ever say just a short while ago. The principal of Nik’s school retired at the end of March, though he really stopped being fully engaged much sooner than that. The current acting principal is also the case manager. She’s stepped into the job with great gusto and enthusiasm and a wealth of experience and perspective that is sorely needed right now. She is putting a lot of focus on parent involvement —not something her predecessor did well, and she is really taking a hard look at how the school communicates with parents/care-givers. She’s also very clued in to assistive technology in a way that the old principal was not.

I recently had the opportunity to participate in the interview process for the new principal. There were some great candidates, the current acting principal among them. I am not at liberty to give any details yet (I signed a confidentiality agreement) but hope the school board will make its choice at their June meeting; the intent is to have someone on board July 1. I came away from the interviews feeling very hopeful.

The candidates which were sent on to the next round of interviews (with the district super) are equally capable of infusing new life and broader perspective into the school and, I hope, in making it a more vital part of our district and our community. All of which I think would benefit not only our specific school but the community at large as well.

Meanwhile, I have also been asked to serve on the strategic planning committee for our school as well. It feels great to know that family voices do matter and that parental input is valued. I am lobbying hard to get some programs going at our school to bring in speakers sponsored by our state’s parent information training center and to make families feel more included and welcomed at school beyond just picking up and dropping off kids or attending IEP meetings! There are a lot of years of hard feelings which need to be overcome and I think it is going to have to come from the new families.

As Gandhi said, “You must be the change you wish to see in the world.”

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"No" …Way!

Well, I decided to try an experiment today. Not sure why I picked today of all days given that Nik was up at 4:15 this morning, was tired out from a full day at school, AND we were having dinner at my parent’s tonight while Niksdad was at work. Usually a recipe for impending doom as the hour grows later…

The experiment? Treat Nik like a completely typical kid regarding discipline. No allowances for possible language comprehension problems, no compensation for his complex history, and no sympathy for those killer baby blues with the ungodly long lashes. (I can’t help it, I am such a sucker for that kid’s eyes and smile!)

Know what?

IT WORKED.

It wasn’t perfect but nearly every time I told Nik “No” in a very firm voice and either made him pick up whatever he threw, move away from whatever he was about to throw, or move away from dangerous/breakable things, etc. he actually responded appropriately! I was so shocked.. and pleased.

Now, I know that it’s a lot easier with a smaller child and I am not so naive as to think one successful experiment means the battle with Nik is won. I know it’s going to get a lot worse before it gets better and even then it will change through the years.

However, I won a far greater victory today…the battle with myself to stop seeing Nik as some fragile creature who might break if Mommy says “No!”

Hah! Not this little guy…the one who likes to flip himself backward and head first off the couch. The kid who likes to slide on the big kid slides instead of the toddler slides (also head first when Mom and Dad aren’t fast enough to stop him). The kid who like hot salsa, Chinese hot mustard, horseradish, and lemons (hold the tequila for now!). Definitely not a frail flower!

The gloves are off. Let the games begin…I only hope I can outlast my fearless, feisty child!

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Ramblings of a sleep deprived mother…

Many Hands Make Light Work or so the old saw goes, right?
I’d like to take a moment to thank the many moms who reached out to me recently —not only through my blog (and through Autism Vox) but through email. I cannot tell you how many wonderful insights people shared and tips and resources, too. Since then, I’ve been running a bit ragged as Nik hasn’t been sleeping through the nights lately.
EMBARASSING CONFESSION ALERT — I sometimes snore so terribly that Niksdad wears earplugs to bed each night! Thus, guess who’s been sleeping like a stone while Nik and I have been having our little visits in the wee hours?!

I’ve been doing lots of lurking on other blogs this week and have posted some comments but haven’t felt like I had much to offer to the blogosphere that would be of any great moment. Nor do I have any great burning issue I feel the need to kvetch about —so, I’ve stayed quiet for the most part. But there have been moments throughout the week that I’ve been spurred to reflection by several blogs and have gone so far as to compose my own post in my head (you know, somewhere in the middle of Acme, Wal-Mart or while at the gym. I think all these fabulous, insightful, and —I daresay, pithy thoughts. Thing is, by the time I get around to my computer, said thoughts? Gone, gone, and gone. Guess that means I’m not meant to share them just yet? …Or some such karmic crap. Could also mean that I am seriously sleep-deprived mom with way too much on my mind and can’t remember for a hill of beans? Nah, I’ll go with the karma bit.

So, in case anyone is interested (besides me, I mean), here’s the latest on my boy wonder:

NIK ROCKS!!!

In the week since he’s returned to school, there’s been a really interesting dynamic happening between both Nik and me and Nik and his dad. It’s like someone flipped a switch and our distant child is finding his way to us. I can’t say for sure if there’s a cause or trigger —frankly, I’m not sure I care. I am just thrilled that my little boy is making more eye contact with us, that he misses me when I leave him at school now, that he gets excited when he hears his daddy’s voice or when I go to get him from his crib in the morning. I love that he’s beginning to show signs of using the concept of “yes” correctly. As in, “Nik, do you want your drum?” (signed in rudimentary fashion by Niksmom/Niksdad) and, at least fifty percent of the time, he will respond with a sign for “yes!” The sign, for those who are not conversant in ASL (Amer. Sign Lang.), is a closed fist rocking up and down from the wrist as if you were nodding your head. Nik, not having tremendous voluntary motor control in some areas, signs by waving his arm in a jerky, slightly side-to-side manner.

It’s pretty funny how Nik responds sometimes. He will reach for the toy in question without signing; my mister independent! We hold the toy out of his reach and encourage him to tell us “yes” by either hand-over-hand or tapping his arm to prompt him. He won’t respond for a bit so we put the toy aside and tell him if he wants the toy he needs to tell us. He usually giggles and reaches for the toy as if he’s not heard a word we’ve said. This goes on a few times. Finally, as we are getting ready to put the toy away, Nik will begin waving BOTH arms. I often wonder what words he would be using if he had them at this point. Probably “Duh, yeah, of course I want the toy. Did you even have to ask?” Yep, I love that he’s catching on to the concept of “yes.”

Every time I turn around lately, it seems like Nik is making quantum leaps forward. My little wunderkind has gone from the child who wouldn’t even bear weight on his own legs one year ago (except in the pool, but I think it’s because he really, really liked Miss Katie!) to the fearless child at the park, cruising from area to area. Even sliding headfirst down the toddler slide and all by himself on the “big kid” slide. Never mind the kid doesn’t stand on his own, much less walk! Nik is fearless and curious.

I watch him beginning to pay attention to things he’s never seemed interested in before —our two cats, the birds outside the window, the flowers growing in our front garden, people around him. It really does feel like a major shift all of a sudden. He’s losing some of his aversions to certain textures of things such as the shredded wood mulch at the park. Six weeks ago, he couldn’t stand the feeling of it on his hands. In the past week, Nik’s been actively seeking it out and running his hands through piles of the stuff. He’s even tried to put some in his mouth (and nearly choked on Mother’s Day! I aged ten years in that one moment!). Nik has never before wanted to put anything in his mouth that wasn’t a hard plastic toy to bite down on!

The irony here is that I am worried now that Nik’s newfound connections and curiosity will give the ADOS evaluators reason to deem him ineligible for the autism program yet again. Last fall, it was agreed that Nik should stay in his preschool class and see how he did with “intensive intervention.” Well, we didn’t know what we didn’t know then and never thought to ask them to not only clarify what they meant but to put it in writing. Won’t make that mistake again!

The challenge we are up against is that the evaluator is fairly new and somehow operating on the assumption that, if Nik makes “progress across all spectrums…it is counter indicative of autism.” Sheesh, that’s like saying that a kid with autism cannot ever make progress or adapt. (It’s this kind of thinking that keeps parents from being able to embrace their neurodiverse child/ren and nurture them to their greatest potential!)

Anyway, that’s what’s on my mind tonight. The brain just shut down so I guess I’m done…for now.

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Belated Mother’s Day

I wrote this on Mother’s Day and don’t know why I didn’t post it. Must be more of that sleep-deprived brain fog…

Anyway, this is for all the moms I’ve met in this crazy blogging world. You are inspiring. Thanks for letting me in “the club.”

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I thought of you all today as I was at the park with my family. I wondered if you were having a good day with your respective families —creating memories to tuck away in the recesses of your hearts or, perhaps, to share with your blogging friends.

As I watched Nik play on the toddler slide with great, enthusiastic abandon, I thought of you and felt your invisible presence with me. I noticed some mothers with older kids watching Nik as he scooted and climbed and crawled in his little crooked hermit crab way that he does without really using his left knee on the ground. I watched them watching him as he babbled and hummed his joyful little tunes as he played. At first, I felt defensive. Protective. I wanted to yell at them to stop staring and to leave my boy alone. I thought of you all there with me and felt your protective circle around us — me, Nik, Niksdad— as we reveled in the sunshine.

One of you must have whispered something in my ear —a suggestion that, perhaps, they weren’t watching and thinking judgmental thoughts about my differently-abled child. Perhaps they were like the mother at the swings which Vicki Forman so eloquently writes about. Wondering but afraid to ask. Wanting to understand but uncomfortable about intruding.

I let go of my defensiveness and tuned them out.

Instead, I focused on watching my little boy blossom in the sun like a flower kept dormant in the ground for too many seasons. Through all the winters of isolating Nik from exposure to illness —especially from other kids — and the long months spent with visiting home therapists, pushing pulling, poking, cajoling, encouraging Nik. To bear weight on his hands, to sit at the age of two, to pull to stand at 2 ½. Through it all, the gut-level knowledge that it would, one day in the future, lead to this moment today.

I watched my boy fearlessly climb the play structure’s steps with his awkward gate until he was “king of the mountain” at the topmost level. The pure joy radiating from his pores as he clambered down to the short, broad slope of the slide warmed my heart. As I reached out my hands to help Nik slide down, he giggled and catapulted himself down the incline without as much as a brush against my fingertips. Anxiously, I watched as Nik struggled to right himself —he cannot stand on his own yet. If desire and determination could make a thing so, Nik would jump and run and dance in the wind. I see it in his eyes, in the set of his jaw as he struggles to rise. His sense of triumph is evident in his laugh as he manages to turn himself around so he can pull himself up using Daddy’s pant leg.

Nik has figured out how to get himself up and down the structure all by himself. Climb, climb, scamper, slide. Roll over, push up, cruise to the right or crawl to the left. One way takes him around the outside while the other takes him under the steps. I worry when he goes underneath because he is little and some of the other kids are so much bigger than he is.

Two boys, who must be about ten, are playing at soldiers or spies; they are hunkered down on their bellies and sneaking through the openings under the slide. They must sense something in Nik that causes them to feel protective. I watch in awe as, wordlessly, they stop to yield the right of way to my little dynamo. Not once, not twice, but repeatedly. I watch the leader’s face each time they approach Nik, who is happily oblivious to their presence and the fact that they could just have easily run him over. I wonder, just for a moment, if the bigger boy knows that Nik is more vulnerable.

Is this what it will always be like as Nik’s mother? The tremendous awe and pride I feel as I watch my child grow and change intermingled with the sadness that he no longer needs me to do certain things, and the fear that others will not see how vulnerable he is. Or worse, that they will and will take advantage of him or hurt him in some irreparable way?

Today, though, I silently smile and share my joy —my tremendous pride —with you all. I know that you share my joy as I have surely felt the swell of pride, and often the sting of tears (both of joy and indignation) as I read about your children’s triumphs and struggles. Your experiences so often mirror mine or paint vivid pictures of the possibilities which may await our family. The riches of raising our special child, of learning to love deeper with each passing day, of learning to stand strong in the face of ignorance, fear, frustration, and exhaustion. Learning to appreciate each individual moment as it happens and being able to look back at the intricate and inspiring tapestry being woven.

Thank you, my new-found friends for the gifts you bring to my life. You make me a better mother and a richer human being for the depths of emotion I allow myself to tap into and the fears I am learning to conquer.

Troubles shared are troubles halved but joys shared are doubled. Today, I feel doubly blessed.

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Lessons in Parenting v1.1

Where to start? Thanks to every one who responded either directly on my blog or through AutismVox. I really appreciate knowing I am not alone and NOT the first to face this challenge. The diversity of suggestions and comments gave me a lot to sleep on last night (and even more to digest today). When I awoke this morning, I can’t say I had any tremendous epiphany but I did have a greater sense of calm about the whole issue. No lesser urgency, just more calm.

It struck me somewhere during my frenetic day that I have spent so long now having to be nurse, doctor, therapist, diagnostician, feeding specialist, sensory evaluator, interpreter, etc. for Nik that —along the way, I’ve not made enough room to simply BE HIS MOTHER. When I read the comments from several parents about just sitting and snuggling together, my first thought was that Nik is so hyper active that he won’t sit still long enough to do those things. But, that doesn’t mean I cannot find our equivalent of those “being together” moments and capitalize on them and try to expand upon them. I simply need to recognize when they happen.

Another good reminder I got was that PLAY is learning at this age. I often feel really guilty about letting Nik play with certain toys that I know feed into his perseverations (is that the right word?) —especially his musical toys that he will sit and play with for 20 minutes at a time or more. But as one mom commented, as long as it’s an educational toy —teaching letters, numbers, shapes, colors —it’s not so bad. And I do have to admit that Nik has a decidedly musical inclination. He doesn’t speak but he can hum numerous songs in perfect tune and/or rhythm. I tell myself that music and logical aptitude go hand in hand —and he sure is analytical even at the tender age of three!

Nik went to school this morning; I was ecstatic and looking forward to time at the gym, a leisurely lunch, maybe even shopping for some new clothes (I’ve lost a lot of weight but that’s another topic for another time). FAT CHANCE! On my way home from the gym, I got a semi-frantic phone call from the substitute school nurse. Nik was having an extreme coping challenge, and had been since pretty much the minute I left him at school. Interesting point here —this is the first time Nik has ever shown any sort of separation anxiety EVER. So, while it sucks that he had a rotten morning at school, I do love the fact that he missed his mama!

But I digress. When I dropped Nik at school today, I managed to run into some of his therapists and his teacher from the deaf-blind program. The DB teacher spent some time talking with me about what was going on with Nik in terms of progress with signing and PECS. She also gave me some pointers on how to implement a PECS-type system at home in “baby steps.” Finally, something I can sink my teeth into!

What was most interesting to me though about our conversation was her comment to me about Nik and moving him into the autism program. She assured me that the program was great and that she really thought it would be good for Nik because most of the kids were “higher functioning” than those he is currently with. She said “Nik is so smart! He really needs to be challenged more than he is right now.” I was FLOORED! To be clear, this woman does NOT work for the school district; she works for a state program and goes to all the schools in the state to work with kids who are classified as deaf-blind. (We really like her a lot and she’s done wonders with Nik. Boy, are we going to miss her when Nik transitions out of the program since his hearing problem seems to be resolved and he seems to hear ok.) I mentioned that I was concerned that Nik wasn’t ready for that class because he is so much smaller, younger, orthopedically impaired. She laughed and said he was “more than ready!”

So, in my long-winded way, I guess another lesson learned is that I may not always have the clearest perspective on my son’s abilities and potential. I guess sometimes I need to step back a bit and see him from a different perspective and recognize that he IS growing and developing. All in his own time.

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A little bit about Nik

I’ve gotten some feedback from some parents asking for a little bit more information about Nik in an effort to help me find some things to try with him. Seems reasonable enough.

Without getting into Nik’s very involved history, I will say that he was born 3 months early and weighed little more than a pound. Nik spent a long time in the hospital and has gone through multiple surgeries on various systems. He has CP to a lesser degree which affects his strength and coordination mostly on the left side. He has absence seizures, intestinal malrotation with reflux and has a g-tube. He is visually impaired in his right eye and he has recently been diagnosed with autism.

We’ve had three different developmental evaluations over the past calendar year. Each one shows Nik roughly in the 6-9 month range for expressive language, 12 months for receptive language, 10 months for fine motor, and 12 months for gross motor. All the evaluators, Nik’s teacher, and his therapists all agree that he has skills scattered to roughly 18-24 months. We all sort of agree that Nik doesn’t test well in strange environments or with unfamiliar objects.

Nik is incredibly curious about how things work. He’s obsessed with things that open and close (doors, drawers, boxes), cannot sit still for more than a moment or two, loves music and toys that light up. He’s big into cause and effect toys. Nik tends to throw things for entertainment (as opposed to a negative response to something). He has a completely ludicrous sense of humor and will dot hings like stick his fingers in his throat to gag himself and laugh hysterically. He finds velcro highly amusing, and he mouths and chews nearly everything EXCEPT food. He has a REALLY tough time with unexpected change and transitions.

Nik responds well to musical cues versus spoken ones. He is mastering a lot of gross motor skills quickly; he’s on the verge of walking and climbs like a monkey! He definitely has some sensory issues but we haven’t yet identified what they are exactly. He likes things that vibrate, loves to swing, loves to roll and clap and kick. In spite of some of his attention and motor skill deficits, Nik has figured out things like how to fasten and unfasten the clasp on his lapbelt in his seating system. He’s learning

One person mentioned not wanting to overwhelm me with information but I believe that information leads to knowledge and understanding. Nik has been receiving early intervention of some sort pretty much since he came home from the hospital (at 7 months) so the idea of therapies and such is not new to us. Frankly, I’d rather try SOMETHING than do nothing.

Thanks to everyone who has reached out to me. On an intellectual level, I know that we are not the only family going through this. On an emotional level, it really helps to connect with all of you.

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Cry for Help

So here we are on day six of Nik being home with an upper respiratory infection as well as a skin infection at his g-tube site. We’ve taken some road trips to the doctor when his breathing got a little scary and pumped him full of antibiotics to help the infection. Poor little guy has been through the wringer. He’s rebounding fast though and I hope (no, make that PRAY) he can go to school tomorrow!
I must interject here —MAJOR KUDOS to the moms that home school their kids, whether with or without any disabilities! I have thought about it but don’t know that I have the metal and emotional stamina to do it effectively without a whole lot of frustration and resentments.

But, my time at home with Nik this week has gotten me thinking about some important things besides the immediate health concerns. Namely, what do I do with Nik in all those waking hours between giving meds, tube feedings, changing diapers and just plain old playing with him? Maybe I am getting caught up in the trap of “keeping up with the Joneses” as I read about moms doing their home ABA programs and RDI and such. I‘m so new to the autism game that I don’t know what those things really are —beyond some vague theoretical understanding —or how to begin to use them. How do I begin to learn some simple things to do at home with Nik so that he’s not just left to his own devices for a large part of the day?

I can’t shake the feeling in my gut that there is something else I should be doing with Nik/ for Nik besides encouraging and celebrating the small milestones. Don’t get me wrong, I absolutely know the value of doing those things —but isn’t there more?

How do I begin to get my son’s newly increased attention span and awareness of his surroundings to work for him? How do I begin to work on learning language and self-help skills with a child who won’t look at me with any degree of regularity? At school they are starting to work on a PECS system for Nik but I’ve not gotten any instruction on how to begin at home.

How do I begin to understand the sensory issues that may come into play with Nik that keep him from eating by mouth or that cause him to have complete hysterical breakdowns with no apparent cause?

I’ve got a call into the behavioral psychologist we’ve seen in the past for some of Nik’s cyclic feeding issues. We haven’t seen her since the autism diagnosis was made official. Meanwhile, I’m here with Nik and wondering if I am doing enough.

This post isn’t just a rhetorical rant from my psyche; it’s a genuine SOS to all you moms out there who have already walked this path. I would love some input on good resources for concrete things to try with a three year old who does not yet walk, does not talk, doesn’t have the most consistent fine motor skills, and the attention span of a, well, three year old. Cognitively, no one really knows where Nik is yet. Personally, I think he’s a smart little guy who takes absolutely everything in and tries to figure out how it all works. Music is a big motivator for him, as are toys that light up.
Help, please? You can either respond by posting here or by directly emailing me at niksmother@gmail.com. Thanks!

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