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Archive for the ‘sensory processing’ Category


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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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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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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So much to catch up on and no idea where to start so I’ll simply “dump”…

First, the Good
Nik has been doing amazing things since he’s been getting regular PT and OT for the past month now. We’ve seen a tremendous developmental surge just in the past two weeks —more than could simply be attributable to the passage of time or the “normal course” of development. I’d almost be willing to test it by stopping therapy for a few weeks to see what happens when we re-start. I said ALMOST.

You’ve already seen the evidence of Nik’s walking; it just gets steadier and faster with each passing day! Today, Nik actually RAN a short distance in the hallway at school. RAN. I’m telling you, this kid is on the move and I hope I can keep up with him! If I can figure out how to upload audio clips to Blogger, I’ll share Nik’s chattering, babbling, singing, and laughter —it’s all been on the upswing these past few days. Eating —well, we’re not giving up, but Nik still isn’t eating at all right now. He’s really interested and even likes a variety of flavors when we offer him “licks” and tastes of things. He pulls on our shirts and practically climbs out of his chair to get to what we have. This kid wants to eat so badly. Now we just have to figure out the means to the end. Medicaid has said they will authorize feeding therapy and we have one lined up; now it’s simply a matter of paperwork being processed. I feel like there may be some forward momentum developing —I hope.

Even Miss D and Miss T —our favorite OT and PT —are amazed at how quickly Nik is not only learning and integrating new skills, but at how he is suddenly figuring other things out on his own. Like how to work the “Sit ‘n’ Spin” or how to sequence the game of getting in the ball pit, tossing the balls out and then getting out getting them to put them back in. He’s showing fearlessness about one of the swings that used to completely freak him out; yesterday he climbed into it all by himself, unprompted! I thought Miss D was going to cry she was so excited! Me? I just smiled. I knew he had it in him all the time —we just needed someone to help him organize his overwhelmed senses and frenetic energy.

His “social” skills are still lagging significantly, but Nik is now responding to songs and games and laughter in ways he hasn’t before. He’s making eye contact in more consistent —even if somewhat short —bursts. He’s actually making a connection that’s not just visual. He smiles and laughs or smirks in his impish way that lets you know he “gets” it.

Miss J, Nik’s teacher at school, sent home a note after the first day of school yesterday:

“Good day…Played really nice w/shape sorter (ind.) and around peers. Nik was cooperative during coloring activity. Did try to escape about 4 times. Independently put self in chair for circle time.”

To many of the moms of Nik’s classmates (he’s in an integrated preschool even though it’s in a special needs school), that wouldn’t merit any response. To Niksdad and me it was cause for celebration. Just a few short weeks ago, Nik didn’t even notice his classmates were there unless they were in his way. Even then he didn’t interact with them, merely plowed right over them. I heard from the school secretary, that her grandson came home from his first day in preschool yesterday and announced he had made two new friends —and named Nik as one of them! I like this new little guy already!

Even today, when I picked up Nik for lunch, Miss J, remarked at the changes she sees in him and the rapid development in his mobility —just since yesterday! Yes, we had OT/PT yesterday after school and I did the brushing and joint compressions with Nik this morning before school. It helps, it really does!

I’ve also noticed that Nik is now playing in a more focused, purposeful manner. Whereas he used to flit from thing to thing to thing all in the span of mere seconds, Nik now spends minutes playing with the same item and really exploring all the aspects of whatever happens to have his attention at the time. He is following some more simple instructions and is trying to help with putting on his socks and shoes. Well, he holds them to the right locations anyway! But the fact that I can now say, “OK, Nikolas, time for shoes and socks” and he comes to sit in front of me and tries to help…it seems like such a trivial thing yet I know from whence he’s come and I can honestly say, “You’ve come a long way, Baby!”

The Bad —
School started yesterday with a mixed bag of emotions. On one hand I resent that I even have to take him to school at all. On the other hand is the fact that I genuinely like some of the staff at school and think Nik’s teacher, Miss J. is wonderful. I can only imagine how frustrated she must get working in an environment where there is always a lack of something —funding, equipment, human capital, concerned and involved parents. I think it gets very difficult because there aren’t a lot of parents who either are willing to be “squeaky wheels” or who have the courage to stand firm and fight for what they know their children deserve. I think that makes it all too easy for the administrators to justify short-changing programs. But I digress.

The staff at school was dumbfounded to see Nik walk into school yesterday morning. I wish I had videotaped his arrival. Jaws, quite literally, gaped. It was priceless! As we pulled away from the school, I said to Niksdad, “Do you think they can handle him anymore?” “Nope.” “Me either!” We laughed —hard!

Sure enough, when I picked Nik up before lunchtime, I heard numerous comments from staff about how Nik was walking off down the halls and how they tried to take him for a walk and ended up running to keep up with him. While I was walking down the hallway with Nik —pushing the stroller with one hand and holding Nik’s hand with the other —Nik took off in the blink of an eye. He darted to a nearby door which was closed, grabbed the door handle and turned. The door was open and Nik was inside quicker than I could even react! The frightening thing for me is that the door he went through was the janitor’s closet where there are chemicals and all kinds of stuff he could get into serious trouble with. It didn’t even faze Nik that the closet was dark. Of course, I am documenting this and will keep tabs on all his “escape” attempts. I also made sure I told both the teacher and the school nurse about my fear of Nik’s getting out one of the exterior doors.

In light of all this, I think I’ll leave him in school ALL day a couple of days next week so they have to deal with lunchtime and nap time, too.

Let’s see. Lunch THEN — Nik used to sit moderately quietly in his chair as the feeding pump ran its course. He would be wheeled out to the playground to sit and watch his peers climb and run and jump around while he sat. Lunch NOW —Nik will need constant supervision because he knows how to take the tray off of his Rifton chair and can undo the lap belt and the ankle straps. Now that he’s walking, he can walk off dragging the chair and feeding pump behind him —quite literally!

Nap time THEN —Nik would play quietly in his portable play yard, content to be ignored or to strip himself and play naked. Sometimes he would actually sleep quite soundly. Nap time NOW — Nik is too busy and too nosy to nap if others are around. He can flip the play yard over even with the weighted sandbags they’ve put on it. Besides which, they are using the play yard for another, smaller child who actually needs to be protected from kids accidentally knocking into her while they play after lunch. Um, did I mention Nik won’t lie still on a cot? Instead, he rolls out of it and then goes to explore. Oh, and then there’s the whole “Poocasso” thing now that he’s started to have BM’s at school (so far).

Combine that with the “Did try to escape four times” which was only in a three hour period, throw in the fact that Nik is obsessed with doors and not only knows where all the exterior doors are but also how to open them —even the automated ones with the push buttons.

I give school TWO WEEKS before they are offering that one on one para they refused in our non-IEP meeting! At the very least, I’d be surprised if they aren’t a tad more open to the idea!

The Ugly —
So, it turns out that this really is a small town after all. I mean, I knew it but hadn’t really experienced it first-hand until this week. Turns out that the PT at school, Miss B, knows the PT we’ve been seeing over the summer (Miss T), my next door neighbor knows both Miss D and Miss T, and the SLP from school, Miss K, is getting ready to start working with Miss D and Miss T, oh and with Miss C who was the “old” SLP at school before Miss K. Confused? Yeah, I need a scorecard myself sometimes. Anyway, it’s just a really good reminder to me of why I have been approaching everything as diplomatically as possible on all fronts. I save most of my furious ranting for you guys! Lucky you, eh?

Actually, I am really pissed about the fact that Miss K is leaving school (though they don’t know it yet; I got insider information! Woo Hoo!). NOT because I think so highly of her; I’m pissed because this means yet another new SLP to work with Nik. Another slow learning curve, evaluate and prognosticate, postpone and —possibly —prevaricate. (Long story, but there’s NO record of Nik’s ever actually being evaluated by the first SLP when he started school; nothing, nad, zilch. Not.on.file.) Can you tell I’m a tad jaded about the luck we’ve had with SLP’s at school? I mean, this is the same school and same SLP staff that didn’t bother to tell us they don’t do feeding therapy and, therefore, couldn’t come up with things to help with developing a rotary chew and bilabial seals and all that other crap. Nope. But they’re HELL with PECS…

At least with Miss K —as much as she annoys the poop out of me —we had a plan in place before the summer started. Now? Who knows how long it will take to get things geared up again?

Oh, and the latest from the Autism Program about the official, written assessment? They’re “working on it.” WTF?? The eval was done in late May (21st), the verbal reporting was done to us (and I do mean that exactly as it sounds) on July 12th. Still no written report. We ran into the autism program psychologist yesterday who gave us some bullshit song and dance about how they are “changing some procedures and the person who was doing the reports now is not doing them and the psychologists are doing them and…” Tappity, tappity, tappity, tap, blah, blah, blah. Like I give a rat’s ass? Where’s my damned report?! But I didn’t say THAT. Instead, I very politely nodded and said, “Well, I am sure that whatever you put in place will be better. However, we still need a copy of the written assessment before Nik’s IEP meeting. I’ll look forward to getting that soon.” Uh huh. I won’t hold my breath on that report being terribly accurate, either.

On the bright side, Miss B, the school PT told me today that she could probably arrange for us to be able to continue working with Miss T, the outside PT, as well; she said she’d be happy to work with Miss T to figure out how to separate the goals and write a letter of necessity for us. Don’t know if I’ve mentioned before how much I really DO like Miss B. Seriously, not just because of this. She’s very good and has been the one therapist at school who has made any effort whatsoever to not only communicate with us but has actually asked me to come participate in Nik’s sessions from time to time so she could show me some new things to work on with Nik at home. She nearly got sent overseas for her National Guard duty; I am so grateful she didn’t have to go!

So, there you have it. Whew, didn’t realize I had so much pent up…no wonder my brain felt like it was going to implode!

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It’s done. Over. The tube is gone.

Let’s hope it helps.

After a rocky night last night and a rushed morning in which we had to starve Nik (just kidding…he couldn’t have anything to eat before surgery), we made it to the hospital with time to spare.

Our little Energizer Bunny did so great; he really is a trooper. During the whole waiting period before surgery, he walked the halls with Mommy & Daddy. ACTUALLY WALKING! Woo Hoo!
He freaked out a little bit when they took him back for the anesthesia. The anesthesiologist was really great though; I warned her that Nik is autistic and has a lot of sensory issues and instead of letting the nurses strap him to a gurney, the doctor scooped him up and carried him —talking to him and laughing. She made him so comfortable. Yeah, I got a little teary…

The surgery was very fast; the recovery was bumpy but we finally made it home early this afternoon. Poor Nik was sick in the car and basically passed out for much of the ride home. I remember reading someone’s comment somewhere (sorry, my blog memory is shot tonight!) about how “if my son even closes his eyes, whether for five minutes or two hours, he’s napped and ready to go!” Yep, Energizer Bunny Extraordinaire struck this afternoon. NO NAP!

Nik managed to shake off the after-effects and was his usual tornado of activity for the rest of the day until he fell fast asleep without a fuss at 7:30. Bliss!

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