Archive for the ‘play’ Category

Just an ordinary day

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In the life of every parent, regardless of age, gender, socio-economic status or political beliefs, there comes the first of many moments which define you beyond the mere biology which has led you to a point non plus. When is it acceptable, nay encouraged, to reward or celebrate bad behavior? This is the cross-road at which I found myself this morning.

Nik and I had a very busy morning today. We woke before dawn —Nik’s bedtime dose of Advil having worn off around 4:30 a.m. —to greet the day with squeals and cries of delight (his, not mine) interspersed with sporadic head banging (mostly Nik). After a spot of breakfast, we packed up our gear and headed off to our morning workouts. Nik’s first —an hour spent in the delightful company of Miss D and Miss T for both OT and PT —followed by my session with my trainer at the Y.

Nik was in fine form this morning. Happy and highly interactive, he greeted Miss D with a big smile then promptly giggled and ran across the room; it’s a delightful new game he’s begun to play, called “Catch me if you can.” The adventures continued through the dual session as Nik independently climbed up the ladder (!!) to the platform above the slide and ball pit. The first time around he waited for Miss D to hold his hands and then he jumped into the ball pit.

The next time through he waited for Miss T to encourage him to do it again —then veered at the last second to slide head first down the sliding board. It is a hoot to watch; Nik points one toe straight out behind him and flexes the other foot to rub the toes along the inside of the slide as a tension-type braking mechanism. All the while he holds onto the outside of the slide with his hands. The result is a perfectly controlled, danger-free sensory delight!

Now, you may be wondering where the bad behavior comes in to play, yes? Apparently, it only happens when Mommy’s not around!

Energized and feeling fine (God bless the wonders of Advil and Tylenol to control the persistent pain and inflammation Nik is still experiencing in his right ear —but it’s not an ear infection!), we took off for the Y. Nik has been doing really well in the child care area as I work out. He pretty much keeps to himself —finding familiar toys with which to entertain himself between bouts of tipping over chairs and laughing hysterically. (Side note, the last time he did this he actually then picked the chairs back up! Progress.) I left Nik in the care of the staff and a very busy group of children. I’m not even certain Nik noticed my departure. Sigh…

Fast forward an hour. Sweaty Mommy comes to get Nik so we can go home. The supervisor begins to tell me how Nik’s been for the past hour; she knows he has autism and other delays and she’s always quick to point out when he’s either having a rough day or doing something really cool. She tells me, “Oh, he’s been having a grand old time exploring the underside of the furniture, tipping the chairs, playing with toys…and stealing snacks from other kids!”

REWIND!!…Did she say stealing snacks? From other kids? She must not know who my child is. My happy loner who doesn’t eat a morsel of food by mouth. Obviously, she’s got him confused with some other cute little boy, right? My face must have said it all. She laughed and said, “Yes, Nik was stealing snacks. He stood and watched the other kids and, when they’d look away, he snuck right in and grabbed some off the table.” Apparently, he even made an attempt —lip service if you will —at eating one. Once he realized it was actual food and not a toy, he spit it out immediately. Apparently, licking food is OK, eating it is another matter entirely.

I nearly fell over from the dizzying rush of shock and pride.

Attention to other children around him?

I think I’m going on vacation; clearly, my work here is done.

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I’m happy to report that Nik is feeling much better today. He’s been back to his normal self since yesterday afternoon. As Murphy’s Law would have it, by the time we got to the pediatrician’s office, Nik was fever free and rarin’ to go.

I have to say, Since we’ve removed Nik from school, every day just gets a bit better. Not so much that Nik is making miraculous progress overnight. More so that we are establishing a rhythm and a pattern to our days that suits us so much better than the frenetic pace we were keeping with school. Nik goes to bed a bit later now but then he can sleep a bit later in the mornings –except on the days we have a date at the YMCA (um, that would be me with my trainer and Nik with the childcare folks). For the most part, Nik’s been cheerful and chipper; even when he was really sick, he still had his moments of raucous laughter and singing. In fact, one particularly funny thing happened yesterday.

I’ve noticed an interesting behavior lately; Nik will put a finger in one of his ears and make a high-pitched “Bah” sound. He does this a couple of times, switching ears –sometimes doing both ears at once. I’ve thought, “Huh, Nik must be experiementing with sound somehow.” Pretty cool, yes?

So, yesterday afternoon in the doctor’s office, Nik cooperated so nicely as he helped Dr. M with her stethoscope and such. He even picked up the otoscope (the ear-thingie) and put it to his ear to help her look in his ears. As he did this, I heard the same “Bah” I’ve been hearing for the past week or so. Then, it hit me. Nik wasn’t experiementing with sound after all; he was imitating the sound of the thermometer beeping in his ear every time I take his temperature (I use the ear kind as it’s the only one he will tolerate). I about fell over I was laughing so hard. Well, I have had to take his temp a lot lately…still do, but that’s another story.

As for me, I feel a sense of peace these past few days; it seems to have settled over me only recently. Whether it is because things seem to have shifted since I spoke with Legal Aid (no new information yet) or if it’s simply because I have realized that we really are fine — with or without school or outside services. Yes, there will be issues to resolve –most notably in the areas of speech and autism supports –but each day Nik and I connect in new ways and find our way together.

I think, too, I am taking great comfort in the writings of some other bloggers –reports of new milestones, fun adventures, following dreams, settling in to a new home and home school, more than one mom deciding to take kids out of school. It seems we are all finding our way on this path of mothering our children and it feels like a sense of peace is indeed settling in for more than just me. Is that what happens when we follow our instincts in spite of the fears?

I am amused by Nik’s antics lately; laughter is so good for the soul. I don’t think I realized how little we’ve been laughing over the past couple of months; we’ve been so consumed by the struggles with Nik’s school. Lately, however, it’s as if Nik can sense the change in the air –the release of the tension –and he’s letting loose, too.

Today, we invented a new game together. Nik likes to do a lot of things hand-under-hand –meaning he manipulates my hands to do things. This has recently carried over into his using his hands to manipulate things like my mouth. Yeah, I’m not crazy about it but he thinks it’s the funniest thing since a Three Stooges marathon. Blame the feeding therapist, Miss M. She is trying to get him to imitate certain sounds so she had him put his hand on her mouth as she made the sounds. Well, Miss M doesn’t live here so I get to do this over and over. I don’t mind telling you it gets a smidge annoying.

So, today, just to be silly –and because I am taking Jonathan Levy’s advice to heart bout making more eye contact and joining in the stims– I played this little game but threw in a twist. Instead of making the M, B, or P sounds like Miss M, every time Nik pried my mouth open I made an animal sound. At first, Nik shook his head as if to admonish me, “No, Mommy, you’re doing it wrong.” After a few times of me making my best Donald Duck (and other animals) sounds, Nik caught on and began to play with great fervor. The more I made animal sounds, but most particularly the duck sound, the harder he laughed –a deep, jiggly, crinkly-eyed belly laugh. The harder Nik laughed the more I laughed. The more I laughed… the more Nik looked at me! We both laughed so hard we were giddy and teary-eyed.

I love having that kid home with me.

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When I discover the cleverness of a remarkable me,
How can I hide it
When deep down inside it just tickles me so
That I’ve gotta let go and crow!

Peter Pan (stage version) “I’ve Gotta Crow”

OK, so I know I said I’d be offline for a bit doing the research and whatnot for our yet to be scheduled follow-up to the IEP from hell. But, well, I gotta crow! Besides, I am waiting for a critical bit of paperwork which school doesn’t have ready yet. Uh-huh, you guessed it; Nik’s IEP isn’t even in it’s final form yet and we are ELEVEN DAYS past the meeting date. Wonder what they would have done if Nik hadn’t been ill all last week

So anyway, back to the crowing bit.

Today, Nik is completely fever-free; he still has the runny nose and slight cough but he’s better. Sooooo…I took him to OT, followed by PT, then playgroup this morning. It was an experiment to see if he could tolerate the full two hour window of work and play.

Nik did awesome.
He gave Miss D (the OT) a run for the money with some things but it was evident to both of us (D and me) that Nik was so happy to be there with her. He did pull his own little “gaslight” on Miss D when she made him ride a scooter around the room. He fought and screamed and kicked and thrashed. Miss D never gave in. When they made it to their destination —the ball pit —and Nik got off the scooter, he gave Miss D a smarmy little look that said “Ha, this is what I wanted all along.” He laughed and toddled off smirking. What a stinker.

In spite of his protests during the scooter ride, Nik actually used a lot of vocalizations and inflections (where’s the speech therapist when you want her, right?). He also did a lot of really great, focused work doing tasks to completion multiple times where he used to simply throw things midway through and go in search of a door to play with. He even let Miss D swing with him for a good long time.

He also did a great job with Miss T during his PT session. Lots of hard work because we are trying to help correct a muscular imbalance in his hips which has developed over time. Nik doesn’t like to bear as much weight through his right hip as he does the left; it’s simply a matter of uneven use and posture but it’s become a habit we need to break. He fought it but made it through and did some nice things in the process. Nik’s gotten pretty good at communicating when he’s either bored or overwhelmed and needs a change of activity. When he’s bored, he throws the things he’s playing with (blocks, puzzle pieces, etc.); when he’s overwhelmed he throws things, too, but it is accompanied by a fit of uncontrollable giggles. Hey, I suppose ti could be worse, right?

So the real crowing is about to start…playgroup. Nik was so present and focused. He played nicely —appropriately and calmly —with a variety of non-electronic toys. Sure, Nik still obsessed about each door and tried to get to them whenever he could and he stuck to lots of things he already knew how to do well. But he tried several new activities and seemed to enjoy them.

He crawled under a low obstacle course Miss T had set up; Nik is not overly fond of crawling or being on his belly and this activity required both. He did this same activity three or four times; each time he did it better and more smoothly.

He played with a baby doll, giving hugs and kisses on the forehead!

He interacted socially with people as if it were a natural every day occurrence for him.

He wanted what two of the other kids had and came over to them to check it out!

I know that many of you understand how some of these things have rocked my world today —in the best possible way!

I think I said this to someone in an email last night —
I am convinced that having Nik away from the sensory overload of the school environment for more than a week has made a tremendous difference in his ability to self-regulate. This, in turn, helps him make such wonderful strides as he did today.

I am so proud of my son —today and everyday; he makes me crow with glee!

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

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

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

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

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

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

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

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

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

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

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