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!