If the shoe fits…

The shoes should have been our first clue.

After a perfectly delightful morning —one which began after more than twelve hours’ sleep for Nik and a leisurely breakfast for myself and Niksdad— we began our preparations for a jaunt to the local peach festival, followed by a visit to the park.  The pre-departure routine is always the same: “Okay, buddy, time for some clean pants.  Bring your toy and let’s get clean pants.”  “Clean pants first, then socks, MAFO’s and shoes.”

Nik is always eager to perform this routine; he loves to go out with us.  Lately, he’s begun to put his orthotics on by himself —even getting them on the correct feet.  He was just beginning to clamber onto the sofa, where I sat waiting with wipes and pull-up in hand, when Niksdad brought over his socks, MAFO’s and shoes.  The scream which issued forth from my heretofor sunny child was unlike anything I’ve heard except when he is in extreme and urgent pain.  It was the kind of sound which makes my heart race and causes me to drop everything and come running in an instant, certain I will find my child covered in blood.

There was much wailing and gnashing of teeth (to put it quite mildly) until we figured out the problem: the shoes.  Perfectly good, serviceable Nike’s which Nik has worn on many occasions though not for sometime.  (His other Nike’s were so filthy from repeated outings to the park— the laces were nearly black— that I insistedwe wash them last night; they were still in the laundry closet, slightly damp.)  I put the offending shoes on the floor at my feet while Niksdad went to get the still-damp shoes.  Apparently, even that was too close for those awful shoes; Nik screamed and jumped off the sofa, grabbed the shoes and ran to the entertainment center to put them on top.  That’s were they’ve been sitting for weeks now; it made perfect sense to Nik’s sense of order.

Once Nik realized the “correct” shoes were going on his feet he calmed down.  In fact, he seemed quite eager for our outing.  Off we went on our merry way.  “We’re going to get ice cream first, then go to the park. Ok buddy?  Ice cream first, then park.”  I repeated that phrase, like a mantra, as we drove.  Nik is usually pretty good about changed routines or routes as long as I tell him the sequence several times over.

I should have known that the shoe incident had my precious boy already wound too tightly.  As soon as I turned right at a traffic light where we normally turn left, Nik’s tenuous balance shifted and the tempest began.  I talked to him in soothing tones as I drove.  “It’s ok, sweetie, we’re going to get ice cream first then go to the park, remember?  It’s ok.  You’re ok.”  All the while, Niksdad held on to Nik’s feet so he couldn’t injur himself (or us) with his kicking.  I drove with one hand on the steering wheel and one hand holding Nik’s sweaty fingers, gently squeezing to give him some proprioceptive input which I hoped would calm him.

We parked right next to the entrance (God bless our disabled parking placard!) and waited for the storm to abate.  When Nik didn’t seem to show signs of calming, Niksdad said tersely, “This isn’t going to work, let’s just skip it.”  His frustration level was, understandably, rising with each howl and each kick which landed on the back of his seat.  Not realizing that Nik was already overwrought and wound too tightly, I insisted we at least get out of the car and try. 

There have been times when simply getting out of the car has shifted Nik’s attention enough that he is able to calm down and we end up having a decent outing.  I also felt very strongly that we needed —I needed— to not be held hostage to the autism.  We spent the first two years of Nik’s life sequestered away from everyone and everything because we had to protect Nik’s fragile immune system.  We’ve spent much of the last couple years isolated from nearly everyone and everything except the occasional family outing.  At some point, I felt, we just have to say “Damn the consequences!” and try —just try— to be a part of the very society in which we want our boy to thrive.

Today was not the day for that.

We never made it to the ice cream or the petting zoo.  We pulled into the parking lot at the park and Nik fell apart again.  By this time, he was so overwrought he couldn’t tell us anything.  “Are you hungry?” Nik signed please so we offered him a bite of his sandwich; he thrust it at me and screamed.  “Do you want to go play in the park, sweetie?”  He simultaneously signed please and shook his head no.  I started to hum Mary Poppins songs to calm him.  It seemed to work until I stopped.  The wailing began again.

We drove home to nurse our wounded hearts and try to figure out what our boy was telling us, what he needed.  As we pulled into the driveway —like magic— the tears and tantrums abated and the happy singing began.

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Nik has now had lunch and is a very happy camper —singing Mary Poppins and Signing Time songs to his toys, playing with his alphabet puzzles.  We may attempt the outing again in a while —or not.

It’s so hard, trying to find the right balance between stretching Nik’s boundaries and honoring his needs.  Between giving my child what he needs and giving myself what I need.  Trusting my instincts and listening to the voice in my heart that says “We have to try…”  The lines are hazy and constantly shifting —like walking on a sand dune in a headwind. 

I believe we are at a crucial point in Nik’s communication development:  the more he knows he can make himself understood —and the fewer tantrums as a result of that success, the more intensely frustrated he becomes in those instances where he cannot make himself understood.  The extremes seem to be farther apart and I feel stretched to my limits straddling the chasm.  But I’ll write more about that another time —after I mull it over some more.

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A Moveable Feast — of a sort

It seems we’ve entered into a new phase of life in our household; Nik has, apparently, gone from not interested to ravenous as a pack of teenage boys in a matter of days. It feels like my day —which used to revolve solely around shuttling Nik to his various therapy appointments, playing with and teaching Nik things like how to put on his shirt —now revolves constantly around food.

If I’m not preparing the next meal for Nik —a fairly labor intensive process thus far, requiring grinding of foods and mashing and mixing of flavors to appeal to his indiscriminate palate but which will also provide balanced nutrition —then I am shopping, cooking, thinking, planning, researching, and feeding the child. Toss in doing mostly the same for my husband (though he’s quite capable of feeding himself, thank goodness), then you can begin to understand why I feel like a junior restaurateur. Oddly enough, I did a stint as a restaurant manager in my long ago twenties but that’s a story for another day —or not.

Still, I can only post so many images of my child stuffing his face or so many twitter posts about how much Nik eats in a given meal. It gets old after a while. Fortunately, we have not yet reached that point! Soon; I promise. But for now, allow me to revel in the glory that is my son’s ever-increasing appetite and advancing oral motor skills.

It’s only been a week since Nik started eating again. Sure, he’s been enthusiastically licking and slurping tastes from a spoon and sipping from his sippy cup for a while, but we’ve graduated to the level of actual consumption. Nik is now averaging roughly twenty to twenty-five percent of his daily nutrition by mouth! Today alone, he consumed nearly seven ounces of food by mouth at lunch.

Not only have we achieved a consumption of notable quantities, we’ve begun the next phase which is acceptance of the spoon when presented in a “typical” fashion. Yes, we still have to turn the utensil so Nik can take the occasional lick but he is cooperating more and more with accepting the spoon and with actually closing his lips around the spoon to clear it.

Some of you may wonder why that is such a big deal or why it’s taken so long to reach this milestone. If you haven’t experienced it, it’s difficult to explain in an adequate fashion but I’ll try:

Imagine if you spent a very large portion of your earliest days of life in this get-up.

No opportunities to learn to suck or swallow, no way to actually close your mouth completely —to even feel your lips touching together— and no way to move your tongue in any manner save for rubbing the very back of it on the tube stuck in your tiny throat.

Then, once you’ve graduated from all that awful stuff on your face and in your mouth, and you’re just learning to use your mouth for good stuff —like eating, someone starts to give you daily medications that make you feel funny and not very hungry. This lasts for two years.

Nik was just beginning to learn new oral motor skills when he was put on the seizure medications which —while they did prevent seizure activity, a highly important thing for his overall health and well-being— dulled his senses to the point that he lost all interest in food and all ability to recall the slight bit of oral-motor muscle memory he was beginning to develop.

In the sixty-two days Nik has been free of those medications, Nik has made such phenomenal progress —much of which I’ve talked about in other places —and he continues to push himself. It’s as if he is consciously trying to catch up on things he’s missed out on.

So, please pardon me for boasting and boring you with the minutiae of Nik’s daily eating habits. It’s been such a hard-fought battle —one I can’t even say is won yet. Someone asked me recently if this means Nik will lose the feeding tube soon; I honestly cannot say. I do know that he needs to make significantly more progress —including learning to actually bite, chew and swallow all of his food —before that discussion is even on the table.

In the meantime, I’m trying really hard to use each meal as a learning opportunity.

When Nik was in the NICU, I was unable to express enough milk to feed him. My doctor told me not to worry about it; he said lots of woman whose children are born so prematurely have this difficulty. What he couldn’t tell me though, was how to deal with the grief I felt over not being able to bond with my child in this most primal way; the knowledge that I would never feel my precious baby suckling while cradled in my arms. It was a bitter pill to swallow then and one on which I still choke in moments of sleep-deprived frustration. It can be mentally and emotionally exhausting for me —this struggle to let go of the guilt I feel around my inability to provide the one thing for my child that seems to be a natural and inherent part of motherhood —nurturing and nourishing one’s child with food.

Whenever Nik fights me about eating, my knee-jerk reaction is to take it personally or to get angry and I wonder what I am doing wrong or why it’s so damned hard. I have to stop and remind myself of, well, so much. That it is Nik’s process and that he is actually the teacher. That he has made such rapid and tremendous progress in spite of the constant barrage of sensory input he has to process with each and every bite. If I change a food, does he know what flavor to expect on his tongue? Is the consistency too thick or too lumpy? Is there too much fiber in his meal which will cause him distress later in the day or night? Does he do better when he’s holding his own spoon and trying to feed himself while alternating bites from my spoon? How much effort does that coordination take him; how hard is he concentrating and how tenuous is his concentration at any given meal?

It is such a deeply intricate dance of give and take, watch and follow. That seems to be our norm in nearly everything these days and it takes a lot out of me. And yet, given the choice? I would feast upon this challenge like a glutton. The progress is too sweet to pass up.

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What’s the Buzz?

Nik’s haircuts have always been hellish experiences for all of us. It usually requires Miss Carol who cuts Nik’s hair and is really wonderful with him, myself to hold and reassure him, two other stylists to help hold his hands away from the scissors or clippers, another to continually wipe away the clippings from his tear-streaked cheeks, and another to clap and sing songs with and for Nik. The bigger Nik gets the harder it is to keep him still; he’s so strong and fast!

Today, Niksdad was not able to come with me to be an extra source of strong hands. I geared up for the worst. When we walked into the salon —which is a very intimate, low-key place —Nik didn’t disappoint me. His lower lip quivered and stuck out in a beguiling pout and the little shrieks of tears began. The waiting was the worst; he kept bolting for the front door and actually managed to get it open!

I warned Miss Carol that it might be a rough one today; it’s been nearly twice as long between cuts this time since Miss Carol had been super sick with the flu and then some other infection. Nik’s hair had gotten so long I could tuck his sideburns behind his ears! I was really worried that he was going to go ballistic as soon as the clippers came out.

Nik fought and cried as we strapped him into the booster seat and we definitely had to hold his hands. But here’s the thing —Nik fussed and cried but he sat perfectly still as soon as Miss Carol started to cut! It only took myself, Miss Carol, another stylist to hold one of Nik’s hands, and the receptionist —a “hip, young grandma” type —who held Nik’s other hand, clapped with him, sang to him, and wiped his little tears. At one point, I had to let go of Nik’s head and he sat so still I was worried he’d passed out!

I think this is the first time ever that Miss Carol has been able to get a perfectly even cut all the way around —not for lack of trying!

Yes indeed, sometimes, the little things can be monumental.

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Visionary or All Wet?

Vision can be an amazing thing. When I remember that I have a vision for something, and I actually keep it in front of me, things seem to magically fall into place. Well, okay, maybe not exactly magically but with significantly greater ease. It’s true, I swear!

When I was in my thirties and still lamenting being single —having met Mr. Rightbutnotrightnow, Mr. WhenHellfreezesover, Mr. OopsdidIneglecttomentionmydivorceisnotfinalized, Mr. Rightfortonight, etc. —I created a vision of what I wanted in the man in my life. Now, let me be perfectly clear and up front; we’re not talking the wish list of “looks like [insert celebrity hunk name here]” or “makes XX amount of money.” More like “loves children and wants a family,” “Education and learning are important to him,” and “makes taking care of himself a priority.” There was more but those were among the top five characteristics I knew I wasn’t willing to compromise on.

I held onto that vision and didn’t compromise; I had a lot of first and second dates that never went any further. And then, one day…BAM! There he was, the man you know as Niksdad; and he was everything that was most important to me and more.

Somewhere along the line —okay, ever since Nik was born —I stopped making time to create visions for the really important things in my life. Some people might prefer to call it a roadmap or a path —it all depends on the technology or ideology you may have learned along the way. In any case, the net result is the same. We’re talking about drifting through life —and through some pretty major events in that life —on a river with a swift current, hidden rocks, and sudden rapids. And here I am floating along without a life vest and an extra paddle or even a clue as to where the shore is.

See, the thing about having a vision and keeping it present every day is that —eventually —one of two things will happen. You’ll either decide it’s not really what you want and let it go with grace or you’ll take steps to make it happen. Like with my vision for Niksdad; I didn’t actively go out and look for him, I merely changed my behavior so that my standards were higher and my needs became clearer to me. In other words, I stopped settling for less than I wanted.

So it has been with this homeschooling, home educating —call it what you will —taking Nik out of school. While it was all well and good to give myself an adjustment period to “figure out what our schedule looks like” and yadda yadda yadda, I’ve realized if I don’t steer this course —hell, if I don’t set a course —we will simply be adrift. Together, but adrift none the less.

So I have started to think long and hard about what I want our daily life to feel like, what sorts of things I want to expose Nik to, how to make it all fit together. I’ve started to create — (drumroll, please) a vision. It’s not complete by any stretch. But there are pieces which are crystal clear to me. The process is illuminating.

And you know what I’m learning along the way? Something I knew once but forgot; Vision is about hope, about possibilities, dreaming maybe a little bit bigger than you think you deserve or can handle. And most important of all? Having a vision requires an open heart —something I haven’t let myself have in a long time. It’s a scary, oh-so-vulnerable place to be. If my heart is open then there is a very large chance that it could get bruised or broken; I don’t suffer disappointments well and certainly not on my son’s behalf. But, open it I must. The nice thing is that my heart is like any other muscle in my body; the more I use it and exercise it the bigger and stronger it becomes.

The more I open my heart and let in hope and possibility, the more that comes back to me.

Serendipity seems to abound when I have my vision groove on, too. This week, as a result of my warbling about repurposing dreams and such, things began to fall into place.

I was at the YMCA on Saturday, having worked out with my new buddy Andrea; as I was leaving, I stopped at the desk to inquire about pool schedules. One of the things I’ve wanted to do is get Nik back into the water; he loves it and really gets a lot of benefit from the sensory input. I over heard the following from the woman in line ahead of me “I’d like to inquire about the special adapted swim for kids with special needs? My son has autism and I think he’d really benefit from this.” Next thing I know this mom and I are exchanging names and contact details and talking about the program her son is in, etcetera, etcetera. Meanwhile, we both left a note for the new aquatic director. I’d done that in the past and not gotten a response so I didn’t have great expectations about anything working out.

HA! That was in my pre-vision days, obviously. Tonight, I received not one but two phone calls from the new aquatic director. She’s only been there a few weeks and is totally revamping the entire swimming instruction program. The first call was to find out more about Nik and what we are looking for. The second call —less than thirty minutes later!! —was to tell me that she has an instructor who is already working with some special needs kids and is available to do one on one with Nik on Monday afternoons beginning on February 25th! She is going to check with the other mother to see if she would like to have her son join us; if not then Nik will have one on one pool time every Monday afternoon —all for $35!

So, if you ask me how this vision-holding thing is working out I’d have to say…

Wait for it…

Swimmingly! I’ll keep you posted…

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A World of Sense

NB: The following is, um, lengthy (says the mistress of understatement). Please, settle in with a cup of coffee, a bottle of scotch —whatever your beverage of choice may be —and enjoy the ride!

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I get the sense that there is a mass movement taking place among many of our children right now; it’s a movement encompassing sensory regulation, social development, speech and language, motor skills, and improving health. Truly, all you have to do is read what’s going on with so many of Nik’s cyber-pals —GP, Isaac, Fluffy, Maizie, Miss M, Bud, Charlie, and so many others —and you can’t help but feel that this truly is a rousing good start to the year.

Now, that’s not to say that everything is perfect and rosy every day for every kid. Of course not; the learning and developmental trajectory for our kids doesn’t seem to be quite as linear —certainly not as smooth and consistent — as the average child. I like to think of it as more of a sine wave. Some days are up, some down. Lately, it sure feels like there’s an awful lot of “ups” happening in our household and around the blogosphere.

I think Nik has made tremendous strides in overall sensory integration and learning to tolerate and accept certain kinds of input. He certainly is showing signs of becoming increasingly self aware and is finding ways to give himself breaks and down time that aren’t necessarily preceded by a complete meltdown —or “coping challenge” as I sometimes call them. Perhaps it’s a combination of his growth and development and mine, too. I am trying to adopt some of Kristen’s Zen attitude and am practicing letting go —and continuing to really trust my instincts even when others would tell me they’re wrong. It’s paying off in myriad ways.

It is said that when a person loses one of her senses she finds that the others become heightened. For example, a deaf person’s sense of touch may be very keen, or a blind person’s sense of hearing or smell seems to increase. Perhaps that is so with parents of non-verbal children; perhaps our intuition becomes heightened to allow us to really tune in to the subtleties of our child’s body language and facial expressions. I truly feel that has happened with me and Nik.

The multitude of ways Nik is communicating now is astounding to me. He still doesn’t’ speak and he won’t point or grunt but he will look very pointedly in the direction of the thing he wants if he is seated and unable to get it for himself —all while making happy little song-like sounds. If what he wants is out of his reach and someone is nearby, Nik will insistently tug at their hand in an effort to drag them to retrieve it for him. More and more lately, I find myself being willing to go along to see where he is taking me. Sometimes I know what he wants but I want him to ask for it. Others, I think I know what he wants and he ends up surprising me. Always, the communication is clear, determined, and involves some joint referencing.

Nik continues to be highly motivated by and responsive to music. We have specific songs for mealtimes, diaper changes, brushing teeth, washing hands, giving medicine, sensory brushing, playing a certain game together, and bed time. Nik will often start to hum one of those songs to indicate he’s ready for a diaper change, a meal, play, or bed. There are many, many other songs we sing too but they are more for fun and learning; those are the songs I often hear through the monitor in the early morning hours as Nik begins his day in the quiet solitude of his room.

Nik is beginning to really catch on to the concept of sequencing. Where he used to go ballistic if we didn’t do a desired activity or an expected routine in a certain way, Nik now understands when I say “Diaper first, then toys,” for example. He used to fight me when I changed him because he wanted his toys right then. Now, he generally cooperates —though he certainly has his giddy, rascally, or obstinate moments. He knows that I will keep my word and give him the desired toy after I change him. The down side to this is that I have to break it down into each step; otherwise, he thinks that as soon as the diaper is on his bottom it is time to bounce off the sofa and play. Never mind the fact that his pants may be around his ankles or he’s got nothing else on since we just removed his pajamas!

Nik’s cooperating so much more lately. Whereas he used to launch a toy from his chair during meal time, Nik will now not only turn off the toy but he will then make attempts to get my attention and hand me the toy. Ditto with his socks after he takes them off in his crib; he used to throw them over the side and laugh maniacally. Now, I can stand there and ask him to give me his socks and he does. He is getting better about showers —he hates bathtubs and has finally outgrown his infant tub —about brushing his teeth, getting dressed, and so many things. It’s really quite pleasant most days!

The ability to express hunger seems to have blossomed recently; it is still non-verbal but it is very clear. When Nik is hungry he will start to whine a bit and lift his shirt to expose his belly. If he knows I am watching, he will sometimes start to pluck at his feeding tube and growl a throaty little growl like a hungry little bear. When I ask if he’s hungry, he’ll either growl again or punch himself once in the side of the head. I’m not sure where that one came from —one of the girls he used to go to school with did that so I wonder if he remembers that. We are working on eliminating that little mannerism!

Often, I will ask Nik if he’s ready to eat or if he’s ready for breakfast, lunch, or dinner. He clearly understands the names of the meals because his response to either question is the same —he signs “eat” very emphatically! Sometimes, he will walk over to me and take my hand to make the sign, too. He really looks forward to meals now and I try to give him tastes of all sorts of things.

As I recently wrote about here, goldfish crackers are becoming quite popular with Nik. Of course, with his desire for strong flavors I have to get the pizza, extra cheddar, or buffalo wing flavored ones! I can only give him one at a time or he licks them and tosses them in expectation of receiving another. If he sees me put the rest somewhere, he will lick the one he has, toss it, then very emphatically sign “more.” Demanding little guy!

Today, he finally repeated the unsolicited bite of food —three times! Once was with a goldfish cracker and the other two were with animal crackers. With the latter, he actually bit off a large piece that I had to fish out of his mouth because he got panicky and couldn’t work it forward by himself. But it didn’t’ deter him. He even let me crush up a cracker and give him bites of crumbs of varying sizes directly on his tongue. The kid wants to eat so bad he can, well, taste it!

Since it’s too cold to go to the park, one of the ways Nik and his dad get to spend some time together is by going to the mall. It’s a great place for Nik to be able to do lots of walking while wearing his harness —backpack really, it looks like a puppy. He gets to walk independently while Niksdad gets to keep him close at hand and safe. When Nik gets tired or overwhelmed, he simply sits down wherever he happens to be. After a few times of this, he ends up getting a ride on his daddy’s shoulders. Hey, the kid’s not dumb!

Seriously, though, we have started to really figure out that it is one of Nik’s ways of showing that he is on sensory overload; he begins to stumble a lot, or starts looking up at the ceiling while he walks (and then trips), or he sits. Niksdad used to get so angry because he thought that Nik was just being willful. I figured he was simply tired. Then we started to notice that it happens more at certain times of day and usually coincides with any of the following: no nap, a big morning of PT/OT and play group, the mall is crowded, Nik didn’t’ sleep well the night before. All of these things —either alone or in some combination —really tax Nik’s ability to process his environment.

As soon as we made this connection, so many other things have started to shift into better focus for us. The times when Nik has suddenly stopped playing and just lain on the floor playing with a favored musical toy, his wanting to sit with his books first thing in the morning, his need to bite sometimes —all seem to occur when Nik is either overloaded and needs a break or when he’s still groggy from sleep. In both cases, he can’t handle too much input. Once we realized the connection, I was able to let go of a lot of worry; I used to think that Nik was in danger of regressing when he would send so much time on the floor. Now I realize it’s what he needs to help him regroup.

It’s interesting for me to watch as Nik becomes more self aware and also more socially aware. It is especially evident when we are at his OT/PT sessions. We do those back to back, thirty minutes each session and the therapists work closely together —often observing one another if they don’t have a child they are working with at the time. Nik has been really exhibiting some developmentally appropriate behaviors —flat out tantrums —when he is being asked to do things he would rather not. On one hand, I want to cheer. On the other hand, it shows me a lot about Nik’s obstinate streak as his personality really begins to shine. (He must get that from his father’s side of the family. Heh, heh, heh.)

Nik’s OT, Miss D, is wonderful with it. When he starts to kick, scream, cry, and pour it on, Miss D simply puts Nik on a mat and lets him work it out. Then, she tells him that she knows he understands her and she’s sorry he doesn’t want to do “X” but he needs to do “X” anyway. It’s always in a loving and respectful way; it’s never about control but is very much about helping Nik to understand that he doesn’t always get his way. And she’s usually giving him some sort of deep pressure or brushing as she’s telling him that, too.

We’ve talked about the importance of presuming competence and Nik’s ability to understand while also honoring his boundaries and sensory limitations. I feel like, between the two of us, we have a pretty clear sense of when Nik is being a typical toddler and when he’s truly reached his limits of tolerance. So we are now starting to build in some behavioral elements to his OT sessions. It’s slightly daunting for me but exciting at the same time; it’s a place that, just four months ago, I wasn’t sure we would get to. The truly wonderful thing about it all is watching how motivated by positive interactions Nik has become; he really responds well to Miss D’s warmth and love.

Nik’s been very responsive lately to all sorts of affection and attention. Nearly overnight it seems my little loner has become interested in playing with Mommy and Daddy nearly every chance he gets. It is both gratifying and annoying all at once! Yes, I know, be careful what you wish for, right? There are days when I get almost nothing done because I am playing games with Nik —sorting shapes and colors , spinning him around in his giant green bucket, tickling, making funny faces and noises which he is starting to mimic. And yet, oddly enough, I don’t really mind it. I know the time will pass so quickly and I don’t want to miss a thing. We missed so much together in Nik’s early life that I don’t mind trying to make up for lost time with him —even if it sometimes feels like we’re trying to make it all up in one afternoon’s worth of play.

All of this sensory awareness and growth is really spilling over everywhere. Nik is suddenly very interested in the world around him. From our two cats he’s recently discovered —who have been living with us for Nik’s entire life and would be just as happy if he continued to ignore them —to the snow falling outside the window yesterday morning which Nik was watching through the glass with great excitement and curiosity; it’s as if a whole new world has just cracked wide open for Nik to discover and explore. He’s unnervingly fearless when it comes to climbing, sliding, touching, or even tasting. He goes through his waking hours at warp speed and comes crashing down to sleep mere moments after his head touches the crib.

In fact, Nik has been sleeping better lately, too. We’ve finally debugged the whole bedwetting thing —for now—by using sleepers with the zippers in the back (cut off the feet and turn them around), diapers with the tabs done in the back, and vinyl training pants over the diaper. I’m sure it’s just a matter of time before Nik figures out how to circumvent that one, too. Seems we’re always looking for that better mousetrap…

Meanwhile (and I hesitate to jinx it by actually saying it), Nik’s pain cycle seems to be in remission or, at the very least, at a temporary lull. Dare I say, possibly gone —at least for the past five days and nights? When it hits, there is no question that there is some sort of pain response going on. But we’ve been trying a few non-pharmaceutical things that seem to be making a big difference. These things include eliminating the possibilities that Nik is hungry, cold, tired, lonely or bored. Sounds trite, no? But really, if a kid doesn’t talk and needs to get someone’s attention what better way to get it than screaming and slamming his head against the floor?

Now, I am absolutely not saying I think it is all behavioral; I do not. There unequivocally is some pain being triggered —by what we have yet to determine. However, in eliminating all of these other factors when and where we have been able to, the episodes come into clearer focus.

One of the things we started to wonder about —in the absence of any sort of endocrine testing —is whether Nik has been having some bouts of hypoglycemia. Where he’s completely tube fed and that stuff doesn’t really stay with you a long time, well, it may be possible that he was getting headaches, irritability, and nocturnal wakefulness from it. As we’ve increased his caloric intake some and made sure to give him some small snacks between his bigger meals, we have noticed a marked shift.

Still no answers —but more questions to investigate. That’s not necessarily a bad thing; we will raise the issue with Dr. Mary soon.

So, there you have it —in a very large nut shell.

A whole new world
Don’t you dare close your eyes
A hundred thousand things to see
Hold your breath – it gets better
I’m like a shooting star
I’ve come so far
I can’t go back to where I used to be

A whole new world
Every turn a surprise
With new horizons to pursue
Every moment red-letter
I’ll chase them anywhere
There’s time to spare
Let me share this whole new world with you

A whole new world
That’s where we’ll be
A thrilling chase
A wondrous place
For you and me

~ A Whole New World (Tim Rice/Alan Menken)

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Something Fishy

Eighteen months ago Nikolas was eating. It wasn’t a wide variety and it wasn’t anything that involved any sort of chewing or significant oral motor effort —all pureed baby foods with some rice cereal mixed in for extra calories and bulk. But he was eating —nearly one hundred percent of what he was offered every day; this made up roughly seventy percent of his overall diet. We were excited; we thought we were on our way to losing the g-tube —in the home stretch.

Then, shortly after Nik began attending school in June 2006, it all came to a screeching halt. We watched as the school OT, then the teacher, then a couple of paraprofessionals all tried different ways to get him to eat. The OT began her campaign while Nik was still eating some —though the quantity was dwindling with each passing day; she was determined to teach him “the right way” to feed himself. “Give us some time to get to know Nik,” she said. “Let us try it our way for a while and see how he does.” To me, that was the beginning of the end of Nik’s eating as we then knew it.

By September of that year, Nik was refusing absolutely every attempt to feed him. He was content to sit and clamp his lips together and push away the spoon or throw it if you gave it to him. He would laugh hysterically as if to say “The joke is on you!” We went through great angst over this new development. We saw a behavioral psychologist, outside speech and occupational therapists for evaluations —we even went to Children’s Hospital of Philadelphia (CHOP) to see specialists in the pediatric feeding and swallowing program. No one was able to figure out why Nik wouldn’t eat or what to do about it.

I had my theories but couldn’t prove them —that Nik had been forced into something at school and he rebelled. That the total school experience was too much for him and he couldn’t pull himself together enough to eat on top of all the other demands being made of him. I knew then that Nik has significant sensory issues but no one was willing to listen. Even the “brilliant specialists” at CHOP ignored our concerns over sensory issues and discounted the PDD-NOS diagnosis Nik had been given nearly a year before they saw him. Their advice was simply to ignore the negative behavior and it would go away. We knew instinctively that was not the answer.

Niksdad and I were frustrated and downhearted about what the future might look like with a feeding tube as a permanent fixture in our lives. For a very long time, I held on to hope and kept trying new things on my own with Nik every once in a while; nothing seemed to help with any measure of consistency. After a while, we stopped trying —we even stopped seeing the behavioral psychologist; after all, she was supposed to help us with the feeding issues and we had reached an impasse. We surrendered to the presence of the hated feeding pump.

It is a natural and normal part of being a mother to nurture and nourish your child. Yet, for the second time in Nik’s young life, I felt that I had failed him. When Nik was born, so tiny and fragile, I was unable to breast feed him; he was on a ventilator and I couldn’t produce enough milk. After six weeks or so of valiantly trying to express what milk I had and only getting a few ounces a day, I had to concede that I would not get to experience that critical bonding with my child.

Now, nearly three years later, I felt that I had again not measured up as a mother; it was a bitter pill to swallow.

September 2007; we took Nik out of school. We were tired and frustrated and very concerned that our son was retreating further and further away into his own world during the school week and taking days to recover. Every weekend —and every week he was out ill from school —the Nik we knew would start to emerge again only to disappear shortly after returning to school. After withdrawing Nik from school, we began to have regular individual OT, PT, and Speech therapy sessions. Bit by bit, Nik began to return to his usual happy, energetic self —in spite of his ongoing health issues. By the time we started with dedicated feeding therapy twice each week, my sense of hope had returned in full.

Nik’s therapist, Miss M, is the same SLP that followed him through the early intervention program with Easter Seals; she has known Nik since before his second birthday and loves him like her own child. He adores her and trusts her implicitly; they have a very strong bond and affection for one another. On top of everything else, Miss M gets Nikolas completely. She doesn’t exactly understand the autism piece, but she sees how smart Nik is and how determined he is to communicate and participate in his own ways. She follows his lead and she seeks my input and insights all the time.

Nik is still not eating by mouth but he has come light years beyond where he was just three short months ago. Nik is now interested in nearly all food except baby food; if he sees a jar of baby food, he will push it away and refuse to even try it. He wants REAL food —the food all the grown ups are eating.

While Nik has not yet figured out the mechanics of chewing —though he is accepting the chewy tubes now where he used to bite them once and then throw them —he has the most advanced licking technique I’ve ever seen. Nik can even manage holding the spoon all by himself to dip into food I offer; he taps the spoon on the edge of the plate to clear the excess, as Miss M does, then licks the underside and the bowl of the spoon. He will not accept the spoon into his mouth or allow it to touch his lips at this point. Yet he will lick food off my finger, and will allow us to rub foodonto his lips —just no spoons! But we’re working on that.

Meanwhile, Nik is into all sorts of tastes and consistencies from salsa and wasabi mustard —I kid you not —to garlic roast leg of lamb and black bean chili. If it’s on our plates Nik wants to try it. And we are willing to let him try anything he wants. He’s a big fan of his Nanny’s homemade peppermint ice cream and caramel custard!

Nik has never been big on finger foods. He used to get very upset when his hands got dirty; no surprise there to anyone whose kid has sensory issues. As Nik has gotten more exposure to a variety of things both at home and through OT, his tolerance for messy, sticky hands has improved greatly. Where once Nik would pick up a cheerio or a goldfish cracker and throw it, he now brings them to his mouth to sample. Often he will throw the first half dozen or so before he settles on one to savor —licking, kissing, and sucking on the poor thing until it’s a mushy mess.

Nik has taken a bite or two of solid crunchy food before but it was kind of snuck in by using a thin pretzel stick in the chewy tube. The first time scared him so badly he wouldn’t even touch the chewy tube for a few days. Miss M said that’s normal; the sound is usually very startling. She said it sometimes takes a while after that for a child to try again.

She was right; just this week, Nik took his first voluntary bite —completely unprompted.

He had been savoring one particular goldfish cracker, holding it by the head, when he gently put his teeth on the tail fins. He didn’t apply any pressure; he just felt the fish between his teeth for a moment. He took it out of his mouth and looked at it with a mixture of pride and curiosity. Going back for a second attempt, Nik applied more pressure this time and broke off a fin in his mouth. Both Miss M and I held our breath as we waited for Nik to begin to gag. The gag never came. Nik didn’t swallow the piece (which was about the size of a grain of rice) but he didn’t gag; he merely worked his tongue around until the bit of cracker was forward enough for him to remove it with his fingers. Miss M and I cheered loudly.

We haven’t yet seen a repeat performance but I know it is coming —Nik is far too interested in food not to persevere. I believe and trust in my gut that the day is not far away when Nik will figure out this business of chewing —of eating. And when he does, I expect he will take on the world —one bite at a time.

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Wednesday Wonders

Things I learned today:

Nik does too have pincer grasp. He uses it very nicely, especially on zippers.

My sofa cushions unzip easier than I thought they do.

Nik’s feet have grown at a rapid pace. He’s already outgrown the shoes we bought for him in August.

Nik can remove his shoes and socks in 5 seconds flat.

Nik has fairly good aim and a strong arm.

Size 6 1/2 toddler Nike’s hurt when they are flung at the back of your head while driving down the highway.

Nik has grown taller at nearly the same rate his feet are growing.

The door handle at the hairdresser has obviously been moved lower; must be to accommodate all the little old ladies…

It takes 6 adult women to cut one (nearly) four year old’s hair. One to cut, one to hold, and four more to join in the singing and hand clapping which masks the sound of the clippers.

Wheels on the bus is the current song in top rotation on the play list.

My child is a born thespian; he specializes in high drama involving tears and shrieks…at least until the chorus of women begins to sing and clap.

The smile and laughter of one small child, bestowed with kingly benevolence upon his subjects, is enough to make six adult women volunteer to sing and clap for him every time he gets a haircut.

Or, as the Master Card commercials might put it:

One haircut for screaming, writhing toddler $12
Tip for hairdresser and staff who clapped and sang to make toddler stop $8
Smiling, clapping toddler with even haircut…Priceless!

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And the mother of the year award goes to…

NOT ME.

Tonight we went to dinner at a local restaurant —a new place for us that we’ve heard some mixed reviews about. We figured it was early enough in the evening that we would be ahead of the crowds and Nik could have an enjoyable time with us —licking foods from our fingers and utensils and feeling like he was completely a part of the “normal” family dining experience.

What a freaking disaster! As soon as we walked in the door, I knew it wasn’t going to be the stellar experience we were hoping for. The hostess didn’t seem to quite grasp the concept of two adults plus a wheelchair. Yes, that’s right, I said a wheelchair. When we dine out we have to take Nik’s special seating system which can be a bit cumbersome. For some reason all the dumbass high school girls working the hostess duties at every restaurant we go to assume that Nik will sit in a high chair —this despite the fact that he is being pushed in a pseudo-stroller the size of a freaking Cadillac El Dorado and I say “No high chair; he won’t sit in one and we need room for his wheelchair.”

So, here we are tonight at the Texas Roadhouse, with Nik and all his gear in tow and the hostess wants to stop and tell us all about how we can pick our own steaks from the display or order from the menu. Nik is practically climbing over Niksdad’s head at this point and I just said, perhaps a little more curtly than I should have, “We just want to get settled in at a table.”
So little miss hostess huffs and walks on, leading us to the very back of the restaurant.. She gives us a table in the middle of the small, cramped room —the perfect location for Nik to do the most damage possible as people are walking past. OK.

As Niksdad and I start to settle in and unpack Nik’s pump and feeding stuff, Nik decides to be Super Baby and tips the table over. Yes, that’s right. I caught it just before the plates went crashing to the floor. Not a single server lifted a finger to help. Yes, indeed, I’m loving this restaurant experience.

But back to the mother of the year thing—

Here Nik’s been ill for weeks and we finally start to get a handle on things; that should have been our first clue that it was a bad decision. We decided to try tonight because Nik was having a pretty good day. Until we got to the restaurant; the noise and the music and the lights are just so overwhelming. Up to this point, Nik has been playing happily and placidly most of the day. Toy throwing has been almost non-existent and he’s been very engaged and making lots of eye contact with me.

As soon as we got settled in and Nik tipped the table, it was all down hill from there. The toy we brought tonight which normally can keep him enthralled for 20-30 minutes? Tossed within the first 3o seconds. Ditto everything he could possibly reach on the table. Fortunately, it wasn’t much, but he sure tried!

Sitting across from Nik, I watched him get all “spectrummy” as I call it; he was in his own little world, grunting, squeaking, waving his hands and turning his head back and forth very rapidly. Little response or acknowedgment of anyone else around him and no eye contact at all. All the things he used to do so consistently just a few weeks ago. Before we took him out of school, Nik would come home so overwhelmed and sensory-overloaded that he couldn’t function. That is what I saw tonight and it broke my heart. It took every ounce of strength I had to not break down and cry in the middle of the restaurant.

It didn’t help that we were surrounded by other tables with couples looking on. Every once in a while I glanced up and could see some odd looks directed Nik’s way. I’m sure the people didn’t realize they were being rude or hurtful but goddammit it got under my skin in a way it hasn’t in a very long time. Maybe it was my own projection, but it felt like they were judging Nik and finding him lacking or odd or weird. It hurts and it makes me angry and sad.

I’m trying so hard to work with Nik every single day now; to spend time getting down on the floor with him and engaging him as much as possible. And it’s been working pretty well. But tonight reminded me of how fragile it all feels. How quickly the thread can unravel from the tapestry we are weaving together. I am anxious that tomorrow will be a challenging day for us both —me because I will be watching for telltale signs of regression or detachment; Nik because he may be exhausted after tonight’s overload. I truly haven’t seen him like this in so many weeks. Possibly since the end of summer school in late July.

To add insult to injury —the food was mediocre and over priced.

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There’s no place like home

When I think of home
I think of a place where there’s love overflowing
I wish I was home
I wish I was back there with the things I been knowing
— The Wiz

Well, if I was on the fence about our decision to pull Nik out of school immediately, instead of next week as I wrote last night, I fell off today with a resounding crash.

Nik had a very challenging day. We had a big storm in the wee hours and the barometric pressure dropped like crazy and then jumped up again a few hours later. It was enough to make Nik’s vestibular system haywire this morning. The glands behind Nik’s ear were extremely swollen and tender today. It seems to get worse with bad weather and fatigue.

He slept a full eleven hours last night and woke up in a pretty good mood. But once he was awake and active, his balance was really off and he fell a lot. He would be happy and singing or playing with a toy one moment and then would fall back on the floor arching and screaming and tossing his head violently from side to side. If he was near a wall or one of the gates he would bang his head against that. He bruised himself by banging against the gate before breakfast even started.

I’m not talking little tumbles either; Nik fell several times and slammed his forehead into furniture and walls. My poor little guy. He’s not a snuggler but, every time he fell and started to cry, Nik would come climb into my lap and cling to me sobbing until I thought my heart would just shatter. I discovered if I sang “Wheels on the bus” really softly —especially the verse about the moms on the bus going “shh shh shh”—and rocked gently side to side, Nik calmed down and relaxed against me for a few minutes. After which, he would spring out of my lap humming like nothing had ever been the matter. Niksdad and I finally realized that Nik was trying to regulate his vestibular system with all the rocking. As soon as he felt “normal” he was ready to go again.

During breakfast —in fact, now that I think about it, every time he was stationary today —he was fine. But he fell so much today that it just broke my heart. During his lunch at noon, Nik fell asleep in his chair. Passed out cold within 15 minutes. Niksdad stopped the pump and disconnected the tube and carried him up to bed. He slept 2 hours straight without even moving.

Throughout the morning, I kept thinking about what it would have been like for Nik if he had been going through this at school. I have a strong hunch the staff would have simply pushed Nik right on through the activities on the schedule —forcing him to participate— and chalked it up to Nik “just being fussy” or “wanting his way.” That was when I realized that we are done. Done with school completely until such time as the law forces us to go back.

In his moments of dazzling happiness —which really were numerous today in spite of the discomfort —my little one happily warbled his extensive repertoire of nursery songs. (Look for his greatest hits disc around Christmas time…wink!) He played with toys in a very appropriate manner for the most part, and he even played some “games” with me. We worked on some OT and PT but it was all in fun —giving and taking coins to put in his singing piggy bank toy, placing puzzle pieces in the puzzle on the sofa after leaning over to pick them up from the floor. Fun stuff.

And, believe it or not with all the kaka going on lately about school, Nik has been making some more incredible progress in so many areas.

Nik’s been experimenting with sounds some more. He’s using something that sounds remarkably like the word “up” as he sings entire verses of songs using that sound. Then he’ll change the volume or the inflection, or even the rhythm by using a variety of sounds. He’s even making a sound that the OT, Miss D, says sounds like he’s saying “Bam!” With my kid, it’s entirely possible!

He’s no longer just throwing a toy to the floor after he’s finished playing with it during a meal. Now, he turns and looks to see if someone is there, turns the toy off and holds it out in the general direction of the person (me or Niksdad) and waits for us to take it.

OMG! And the letters…Nik is starting to show the tiniest bit of discrimination with letters. He has a leapfrog toy —the spinning alphabet ball on a stand —that he loves to play with; it’s his current favorite toy these days in spite of the fact that it doesn’t have ANY lights! That’s amazing in and of itself. Anyway, Nik has been pressing “W” a lot lately so I started asking him to “show me the letter W.” First, I’ll spin the ball so it’s not right on the W. Sure enough, Nik consistently turns the ball until he finds and presses that W! Today, though, he started working on “M” which I find interesting since it is an inverted W. I am not sure if it’s a case of confusion or if he’s truly noticing that the two letters look similar.

And the kisses and looks and lap snuggles —brief as they may be — are all increasing with each passing day. Today, Niksdad came to talk to Nik and say good bye before going to work. Without any prompting, Nik smacked his lips together twice then took Daddy’s chin in his hands and leaned his forehead in to Daddy’s lips for kisses. He’s making a distinction between giving and receiving kisses!

And with me, he’s made the enormous connection that giving Mommy kisses when she hasn’t asked for them is valuable currency. He actually had the audacity to do that tonight after he deliberately threw a toy after being told not to. The fact that he threw the toy is not unusual; I expected that anyway. It was the fact that he looked at me, smiled from ear to ear then smacked his lips together and gave me a kiss on the mouth! I nearly fainted on the spot!

I swear, it’s as if he’s telling me, “See, Mama, I just want to be home with you. I’ll show you all the wonderful things I can do if you teach me. It’ll be wonderful won’t it Mama?”

Oh yes indeed, my child. Yes indeed.

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Meshy Eater

Well, never let it be said that it is ever dull or quiet at Nik’s house! Let’s see in the span of a week we’ve had ear surgery, Nik started walking, we replaced our family room floor, the start of school, and the bump on the noggin scare. We are definitely riding the roller coaster this week. Tonight, it’s on the upswing, or I suppose it could be down; it all depends on which part of the roller coaster ride is your favorite. Mine is standing on the sidelines watching!

So, you know we’ve been doing the “intensive” OT for a little over a month now, right? We’ve seen some amazing changes and rapid progress in Nik’s physical skill development, his social interactions, his attention span —you name it, it’s galloping forward right now. Except the eating. Now, in Nik’s defense, I have to come clean and confess that I have not made any efforts to feed him for awhile because of the whole flooring issue in the family room which is now beautifully resolved. Plus, I got tired of feeling like a failure multiple times a day because I have not been able to get my child —who once used to eat quite a bit (albeit pureed foods) —to even accept so much as a spoonful of anything without it becoming a major struggle. I am certain that the behavioral therapist and the feeding specialist would both huff and sigh and tell me that “Of course he won’t eat if you aren’t being consistent…blah, blah, blah.”

However, this is one of those times I absolutely trusted my instincts — and I think it is paying off! I have thought for a long time that the root of Nik’s yo-yo eating has been sensory; he just cannot regulate himself enough to focus for more than a few minutes at a time —certainly not long enough to make it through a “meaningful” meal!. I’ve been waiting to see how he responded to the OT before attempting oral feeding again. Now that I no longer have the family room floor as my excuse for not feeding Nik, I decided, “Tonight the feeding commences whether I am ready or not!”

After playing with Nik for a while, I did the whole brushing and joint compression routine that Nik has come to crave. Seriously. Whenever he sees the sensory brush, he starts humming “Wheels on the Bus” (the song I sing to him while I brush him and do compressions) and comes scooting over to sit on the floor between my legs. He snuggles back against me and, every so often, reaches for the brush and starts to rub his palm on it. You’d never know this same child couldn’t stand the touch of this very same brush on his palms just six weeks ago!

My hungry little guy climbed into his chair, fully expecting the usual tube feeding and desultory licks of Mom’s apple or something. Boy was he thrilled when I broke out the food! I mean, it’s not like we don’t offer the kid food a lot —we do. But he only ever wants to lick things. Tonight, he gobbled down an ounce of apricots (pureed), let me “brush” his teeth with a teething biscuit, tried a lick of a strawberry fruit roll up, and devoured a slice of peach in a mesh feeder.
My cynical father jokingly remarked, “A whole slice? Boy, another week and he’ll have finished the meal!” Har-har.

So, just what is the big deal about tonight’s meal? Well, let me rattle ‘em off…

First, the fact that Nik ate at all without even fighting me for control more than once or twice is huge! He even tried to feed me a couple of bites of apricots. He laughed, he made eye contact, and he opened his mouth and took the whole spoon. Nik normally either takes the smallest bites humanly possible, or he somehow gets the spoon under his tongue —where everything goes. He is an incredible “guarder.”

Second, is the stunning fact that Nik actually tried a new flavor! The strawberry roll up got mixed reviews. But I am proud of him for trying it. I know he likes fresh strawberries so we may just have to work on the whole texture of the roll up thing. So, that’s actually third —a new texture, too!

Then, Nik allowed me to actually touch his teeth with something resembling food (the teething biscuit) and he didn’t fight or gag or choke. Major, major, major deal about that! Usually everything goes under the tongue. Watching Nik taking a “sip” from a glass or open cup always cracks me up; it reminds me of my cats’ drinking water from a bowl. Lap, lap, lap.

Finally, the biggest, hugest, most colossal deal of all? Drum roll, please…

Nik. Touched. The. Mesh. Feeder. The same object which only weeks ago was a thing to be reviled and swatted away —preferably with Mommy’s hand so Nik didn’t even have to touch the loathsome texture! Not only did my fearless boy touch the thing, he licked it —a gazillion times! He slurped and lapped and squeezed and sucked on that feeder like nothing I have ever seen him do in his life! At one point, he actually growled a cute little sound and shoved the whole thing in his mouth and BIT DOWN!

The poor peach slice never stood a chance. When Nik was done, all that was left was the merest residue. A hint of pulp. And one sticky, smiling boy.

Cry? You bet you’re ass I cried! I’m crying now as I’m telling you about it. I am so proud of my child. I feel like there is a light at the end of this damnably dark, serpentine tunnel called “oral feeding.” It may take us a while longer to get there; we may falter and try to turn back. But I think that somehow —I don’t know when —we will make it through to the light.

I feel so encouraged. Hopeful. Light. Filled with grace.

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