Feeds:
Posts
Comments

Archive for the ‘speech’ Category

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else

Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else

Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten
Natasha Bedingfield ~Unwritten
On top of the recent escalation of Nik’s mystery pain, he’s begun having a really difficult time lately at PT and OT. We have no idea why; I’ve been with him nearly every single time and if I wasn’t then Niksdad was. Nik used to laugh and clap and squeal with glee when we pulled up in front of the office. For the past three weeks though —whether in conjunction with the escalation of his pain episodes or for some other reason entirely —Nik has had complete meltdowns each time we go.

Things progressed from Nik screaming and crying as soon as we walked through the door —and proceeding to then thrash and slam his head on the (carpeted) concrete floor— to having a complete screaming, crying meltdown in the car as soon as he realized where we were going (based on the route we took). On Tuesday of this week, Nik lost it shortly after we left home; it’s a six mile trip each way. We decided to discontinue his playgroup because it got to be so bad; I think he was freaking out some of the other moms and one or two of the kids, too.

Anyway, yesterday was no different —at first. As soon as we pulled out of our neighborhood and onto the main road, I saw Nik’s face scrunch up in the pre-meltdown expression. Since he’d been in a great mood thus far all morning, I knew it wasn’t from pain; I started to distract him by singing songs from Signing Time videos —over and over and over. It worked to not only distract him but it got him laughing and clapping and trying to sing along. (You should hear his rendition of “…Signing Time with Alex and Leah, come and play…;” it’s utterly adorable!) I thought I had found a magic solution —until I pulled into the parking lot.

Interestingly enough, Nik cried and screamed but he cooperated with me. He didn’t kick and thrash and roll on the ground as he has done in the past few weeks. He sat down in a chair at my request, took off his shoes and coat, and then ran screaming…to the playroom! There were many bumpy and hysterical patches but, overall, Nik did really well. Miss D, our awesome OT who is now fully certified in sensory integration diagnosis and techniques, followed his lead and found ways to turn each struggle into a new game. By the time we left, Nik was smiling and happy. He spent more time playing one-on-one with Miss D and really paying attention to her —her eyes and her face especially, and he even gave her a kiss when we left! Then he turned around and wanted to go back inside again! So we did that for a little bit; I really wanted our leaving —and Nik’s experience of entering the building, too —to be joyful for him.

I am happy to report that it worked. In fact, Nik spent the entire rest of the day being giddy and giggly, affectionate and funny, and as cooperative as any willful toddler can be in one afternoon. In short, the rest of the day was delightful! But it gets better…

We had a feeding therapy session in the afternoon; Nik’s nap was cut short —always a crap shoot —and it was a decided change in routine which I wasn’t sure Nik would handle well. You guessed it; I was wronger than wrong! I think I can say without reservation that this was his best session ever. EVER.

Maybe it was our visit to the neurologist on Thursday, followed by the bloodletting —er um, visit to the lab— for a multitude of tests. Or perhaps the moon and stars were in perfect alignment. Whatever the reason, Nik was a total superstar with Miss M. To quote Miss M, “Nik’s the best speech therapist I’ve ever met!”

You see, Miss M has been working with Nik to teach him the necessary oral motor skills to actually take a bite of food. Progress has been slow. It’s only been very recently that Nik would even tap an apple wedge against his top teeth, let alone let any other food come into contact with them. He still guards his lower teeth with his tongue even when he’s sipping from a straw. We’ve been doing exercises with his chewy tubes to strengthen his masseter muscles as well as to try to reduce some of his oral defensiveness.

The game plan has been to gradually move through stages:

1. accepting the tube near the back of his jaw, followed by;
2. five consecutive bites on the tube at he back of his jaw on each side, then;
3. inserting something crunchy like a potato stick inside the tube and repeating the bites at the back of the jaw to introduce the sensation and sound of crunchy solids.

The idea is that Nik would gradually tolerate the sound of the crunch —which startled him terribly once before— and allow him to get the tiniest bit of dust-like crumbs on his tongue. This would then lead up to:

4. taking multiple bites on the tube and crunching the contents and then;
5. voluntary biting in the front of his mouth, followed by;
6. biting and crunching along the full range of his mouth.

You can see where this is going, right?

If I told you that we’ve only recently mastered step two, you might understand why Miss M and I were both utterly speechless yesterday when we introduced step three and Nik took off like a champion thoroughbred and raced through the entire process —all the way to step six —completely independent of any coaching or input from Miss M! Multiple times.

As if that weren’t enough, Nik showed off his new growing sign language vocabulary for us; he can now sign eat, apple, please, thank you, more, shoes, and cat. He is close to mastering share, cheese, and bye-bye. Yesterday, we added another emerging sign to the list, too! But let me back up a bit, first.

Nik’s current manner of asking for things is to grab our hands and direct us toward the object he wants; sometimes he wants us to perform a task such as opening the buckle on his lap belt or taking off his shoes. We are trying to pair Nik’s non-specific requests with at least an acknowledgment. For example, when Nik drags my hand toward his lap belt I will say “Oh, you want Mommy’s help? If you want Mommy to open the buckle show me ‘please.’ Sign ‘please’ for Mommy.” As I say this I am also showing him the signs for open and please. (Nik doesn’t sign yes so we use please in its place.) When he signs please by patting his chest, I open the buckle and praise him.

The most important element is that we make Nik acknowledge and confirm what he wants. He is becoming much more consistent with this. When and where we can, we try to introduce new signs. So when he “asked” me to open his lap belt yesterday at the end of therapy, I asked him to show me open —fully expecting that he wouldn’t but that we would make a few attempts before we defaulted to please. You could have knocked me over with a feather when Nik responded with a sign which is clearly his rendition of open and then followed it with the intonation of the word as well!

Yes, I got teary.

Meanwhile, Miss M needs to completely rewrite all of Nik’s feeding goals and some of his speech goals. His augcom devices have finally been ordered and should be in soon. At this rate, I suspect Nik may outgrow the need for those specific devices pretty quickly. We are going to start working on photo cards soon, too.

In other areas, I think I’ve mentioned before that Nik is beginning to really cooperate with simple directions such as sit down, give it to me, give Mommy a kiss, come here (not as consistent but I think that’s more about willfulness!), and the like. He is also making big strides in self help skills such as putting on socks and shoes —with help, of course. Nik also practices taking off and putting on his own shirt nearly every chance he gets —sometimes with very humorous results.

So, as Kristen reminds us in this eloquent post, our children’s stories —indeed, all our stories —are still largely unwritten. Nik’s will, I suspect, have multiple plot twists and more than a few cliff-hangers before it’s finished. Just when I think I am in control of the plot, my main character throws me a curve. But then, I wouldn’t enjoy the ride half as much without a little excitement, right?

Read Full Post »

Well, in a continuation of Kristen’s reference to a perfect storm, I must say that today’s evaluation was absolutely incredible. I am practically bursting with hope and joy and good feelings. And you know what? It feels good! It must be contagious! I know, I know, it’s the whole karmic cycle, the you-get-back-what-you-put-out-to-the-universe kind of stuff but…REALLY! I am not sure if the car was actually running as we drove home; for all I know we could have been flying I felt that good!

The evaluators really got Nik —and he was gracious enough to let them. In an hour and a half, this team of two people was able to discern more about my child’s personality, his intellect, and his communication abilities than an entire school full of therapists, educators, and psychologists was able to over the course of fifteen months! That said, I must also acknowledge that both Nik’s OT (Miss D) and SLP (Miss M) contributed greatly to the process; Miss M accompanied us this morning and Miss D talked to the staff OT yesterday to provide her input. I also have to take a great deal of credit because I made damned sure that this was not going to be another “wasted opportunity.” I provided tons of information, insights, and feedback. I set up our morning so that Nik had opportunities to settle in a bit. I went in with no specific expectations —willing for once to let the process take us where it would.

And, oh, what a wonderful ride!

In the end, we came away with some concrete recommendations for a couple of basic devices and —even better —how to actually use them. Not just “Push this button to record …” but how to actually implement them as a fundamental part of Nik’s daily routines; we are just beginning the administrative process to actually get them. Perhaps most importantly, I came away with the absolute knowledge —firmly rooted in my gut now, instead of just in my conscious, rational mind —that the decisions Niksdad and I agonized over all those months have paid off. Richly.

What the team saw in Nik this morning would not have been possible even three or four months ago. I cannot fault the school for not wanting to see these things in my son, but I do blame them for their unwillingness to provide the environment he needed to make the gains I always knew were possible; I think they simply didn’t know how and would not admit it.

DL, the assistive technology guru was all that I had heard he was —and more. Or is it less? This very physically imposing man was the gentlest of giants with Nik; after a very momentary meltdown (on Nik’s part, not DL’s) there was an instant connection. DL engaged Nik in a way that simply captivated all of us. Nik gave his attention in brief intervals with an intensity I am seeing more and more lately. It is an awesome thing to witness in my child. I wonder if this is sort of like what Drama Mama was describing in this post today. In any event, DL was masterful in the most understated and reassuring way. Watching him in action with Nik was a gift.

During the course of the evaluation we watched Nik do things he’s never done before. I don’t know if he felt the good vibes and knew it was safe to fully reveal himself but it was remarkable. Sure, he sorted some cups by size and then by color (yay! those sorting and classifying skills are finally kicking in!), but Nik came to me seeking comfort and reassurance —not something he really does even in the throes of his worst episodes —and he accepted it. He complied when the OT asked him to come back to sit down with her. He initiated play with DL and then responded with appropriate frustration when DL wouldn’t let him do something he wanted to do.

DL commented to me, “it’s very obvious Nik fully understands physical cause and effect but he also clearly understands social cause and effect.” I was floored. How could this man be so incredibly insightful about my “challenging child” (what he used to be called by some of the staff at his school)?

And when did my son suddenly catch on to this whole social cause and effect thing? Clearly I wasn’t looking when it happened!

I imagine that — much like life in general —everything is a matter of perspective. DL is trained to see all actions and reactions as communication; in his eyes, Nik was communicating loud and clear. The objective, he says, is to help Nik find ways to organize those communications and to learn that there is a dance of give and take.

This morning’s experience left me with the very good feeling that Nik will not only learn to do this dance but that he will, in time, become the master.

Read Full Post »

I really can’t say
How I feel right now
I would if I could
But I don’t know how
Just give me some time
And I’ll come around
I’ll pick myself up
I’ll dust myself down

~ I Really Can’t Say (UB40)

? ? ? ? ? ? ? ?

If you need words for this entry go here.

(For more Wordless Wednesday posts go here.)

Read Full Post »

Apologies for the disjointed writing which follows; I am struggling to find words and string together coherent thoughts lately. I seem to be suffering from sort of mental (emotional) malaise and am finding that I get easily distracted. That is why I have been so “bloggy quiet” as Kristen wrote to me in a recent email.

Nik’s been ill again. It’s nothing mysterious or scary; just the upper respiratory crud that’s going around with a touch of stomach bug thrown in. He’s pretty much over it except for the super snotty nose which makes it hard to breathe and sleep at the same time. Breathing seems to be winning lately.

In spite of the illness, the tyrant, er um, I mean Nik has been ruling the house with an iron fist. His adoration for Mary Poppins? At an all-time high. If I am within reach of his hands, they are grabbing mine and dragging me toward the TV to turn it on for him. I think he now knows how to SPELL Mary Poppins. God knows, if I say the name he starts squealing and dancing around like a ‘tweener who just won Hannah Montana tickets from some radio show! Did I say I was fond of Mary Poppins? I may have been mistaken.

When I won’t give in to the MP obsession, Nik insists that I play. Never mind the growing mountain of laundry, the cat hair clumps on the carpet, the breakfast dishes in the sink, or the fact that Mommy hasn’t had a shower yet, Doesn’t matter to him. I am getting stronger at telling him “No” and sticking to it. Even when it results in the world’s cutest suck-up tactics. Really, where does the boy learn these things?! Nik will come over to the gate and look at me and start making kisses with his lips. If he’s really angling for my attention and cooperation, he will sometimes walk to the entertainment center, tug on the door, and say “Mamamama” before he comes back to tug my hands again. If that doesn’t work, he goes for the triple play which includes his rendition of “If you’re happy and you know it…” (lots of huh-huh’s and ba-ba’s with a few ga’s thrown in for flourish) combined with the kisses and calling my name.

Sigh, the boy is a master manipulator, um, negotiator. (Hey, it’s a matter of semantics, right?)

On the health front, Nik’s mysterious bouts of pain have diminished quite a bit since we started treating them like hypoglycemia. We still deal with the nocturnal waking but not as consistently. No word yet about scheduling his video EEG; we are entirely convinced his pain episodes are not related to seizures. None the less, it will be good to have a clearer picture of his seizure activity, too.

Nik is doing well with all his therapies; nothing really new and exciting to report yet, just slow and steady progress. Consistency. He did recently learn the concept of (and word for) smell. Now he loves it when I give him things to smell. His favorites seem to be peppermint extract and one of his blankets fresh out of the dryer. The kid’s got good taste. Of course, there is also the random smelling of his socks when he takes them off; he is all boy, for sure.

Nik is also getting more adept at communicating —or at least knowing for himself and trying to communicate to others —when he needs a break. Last week in OT, Miss D kept trying to get him to do something and he kept trying to get away and go into a room with the lights off. Usually, Nik will do anything for Miss D but he wanted no part of even playing with a favored toy. I wondered aloud if he was feeling like he needed a break. God bless Miss D for listening and trusting; she let him go off on his own and, sure enough, he took a very short break in the darkened room and then came back out to play with her. I’ve noticed him doing more of this sort of thing lately when he has had multiple appointments back to back or been out to the store or the mall with Niksdad or me. Where he used to simply fall apart, now he first tries to find some quiet space for himself. Often it looks like dragging s few toys into his Thomas the Tank Engine tunnel for some quiet play, or hiding under his giant green bucket with his star stacker toy.

Nik has also recently decided that naps are for babies. Oh, don’t get me wrong, the kid goes down every afternoon after lunch; he just doesn’t sleep anymore! When I offer him a toy or a book he will take it and play quietly in his crib. Sometimes he will simply sing little tunes to himself. He has begun to push the limits, though. The toys he has don’t entertain him long enough and he wants to be up and about. Yesterday, he cried and wailed in anger and frustration for a good 45 minutes before I finally got him up. Today he is singing. I suspect once he figures out that I am not coming to get him soon those songs will turn into protests.

As I write all this it occurs to me that what I am describing is a lot of age appropriate or developmentally appropriate behavior. What a nice thing to realize!

We are definitely approaching a crossroads of a sort; though Nik has many, many delays and multiple challenges, he’s doing very rapid catching up in some areas —especially cognitively. He’s learning the art of manipulation, effective use of the nuances of resentment and anger, and the value of judicious use of self-injurious behavior. Where once it was easy to distract Nik and redirect him from undesirable behavior, now he is set on what he wants and will brook no opposition. Sigh; he is in for a lifetime of heartache in that regard! Niksdad and I are constantly re-evaluating our methods of dealing with some of the less than pleasant behaviors; we need to make sure we are setting expectations that are reasonable and attainable for Nik while also making certain that he does not inadvertently get rewarded for bad behavior which is within his actual control. It’s that last bit “within his actual control” which is difficult to determine sometimes.

The pressure to interpret Nik’s budding communication is also tremendous. His voice, face, and body have all become much more expressive. The range of communication —that is to say, the variety of methods he uses —is not so great but, those methods placed into context communicate so much.

Tomorrow there will be a lengthy evaluation to determine what, if any, augmentative/adaptive communication device might help Nik find more and better ways to communicate. I am numb about it, frankly. Having been through so many evaluations and interventions in Nik’s short life —going through cycles of hope and disappointment, anxiety and frustration, and finally feeling left adrift to figure things out on our own —I am not certain anymore what I hope and expect from tomorrow’s experience.

I will try to write more about that after the appointment.

So now my brain has turned left when I want it to turn right and Nik has begun the wails of protest. Sigh…small measures of quiet are so hard to find some days.

Read Full Post »

…otherwise known as an update on Nik’s friend N and his family.

I am happy to report that N’s mother, M, has shaken off the deer-in-the-headlights demeanor which was in full force on Saturday night. Apparently, my mentioning that there was still no speech therapist at her son’s school —Nik’s old school —was the first she had been informed of the fact. It took a few days for her to digest the information, formulate a plan, and take action.

While she was simmering, stewing, and plotting her moves, I took the liberty of speaking to Miss K, the speech therapist at the place where Nik has his OT, PT, and playgroup; she is the former school SLP who knows N very well. She was quite disturbed to hear that the school administration hadn’t at least informed the families that there was no SLP or made any arrangements for per diem coverage or anything. She told me to tell M that she should contact the school principal and ask him to arrange compensatory services immediately.

I called M today to pass along this information; my timing couldn’t have been better! M was, in fact, on her way to the school to corner the highly elusive principal. It seems she’s been getting the runaround about an appointment and had enough. Can’t say I blame her; Niksdad and my experience with the “new” principal left a bad taste in our mouths and I have heard from multiple sources both inside and outside the school that he has shown his true colors as a “master manipulator” and politician who doesn’t spend much time actually in the trenches of the classrooms and satellite sites. We’re not talking a large operation here, folks; there are four sites total and fewer than one hundred students involved. It makes me sad and angry but there is little I can do about it except file away the knowledge for future dealings with him, if necessary.

Anyway, M was on her way to the school and ready to spit nails in the form of going to the school board, filing grievances, etc. The only fly in the ointment as far as she could see was the fact that she had her daughter, S, with he and was concerned about how to stay focused on the issues at hand. Turns out her husband had to attend a chemical warfare training in preparation for his upcoming deployment; just hearing the phrase “chemical warfare” made my heart skip a beat —not in a good way. I immediately offered to take S for her; I didn’t know what it would look like or how Nik would handle it but I knew I needed to do that for her —and for N.

So for a couple hours early this afternoon I got a small taste of what it would be like to have two kids in the house! Now, I know that when you have a second child there is all sorts of adjusting that happens gradually; I’ve not yet heard of any child emerging from the womb already walking, climbing, and eating Cheerios or Goldfish crackers! None the less, it was a fascinating and daunting experience for me.

Nik was in his chair having his lunchtime tube feeding when they arrived. S was content to sit on the floor and play with Nik’s toys while Mary Poppins played in the background. Nik, by and large, wasn’t terribly interested in what this pint-sized carrot top was up to —until she climbed aboard his beloved musical scooter. Um, I guess I need to work a bit on his sharing skills; he responded by shaking his head and saying a very emphatic “NG-NG-NG-NG-NG!” and having a near meltdown over it. S, is apparently well-versed in the art of tormenting her older sibling and merely giggled as she rode away. Poor Nik.

(Disclaimer: I do have to acknowledge that S graciously shared her Cheerios with Nik more than once. Thus proving she has mastered the art of negotiation using her feminine wiles!)

But he got his own in kind once his lunch was done and he was out of his seat; he kept taking S’s beloved pink sippy cup. Being the pampered girly girl she is, S responded by shrieking, tears, and a quivering lip as she raised her arms to me to pick her up. Yes, she walks all over her docile big brother, N, but she’d never last a day with Nik! Nik wanted to clap her hands together and she got scared. She pulled the same shrieking, “Save me!” behavior. She’s adorable but, man, she needs to get a bit tougher!

(Yes, I admit it, I am grateful for my rough and tumble son —even when he discovers fishing in the toilet as a new way to entertain himself while Mommy is at the gym and Daddy is trying to study! Of course, perhaps my daughter would be just as rough and tumble, too? A point not worth pondering as it will never come to pass. Truly, it won’t —we’ve taken care of that!))

When M returned from her meeting, she was fairly pleased with the way things went. She received promises of immediate action and authorization for compensatory speech services (as well as some other things they discussed having to do with the physical conditions of the bathroom in her son’s classroom). I told her to make sure she puts everything in writing and to not trust blindly that school will do what the principal says will be done without committing it to the record. (What can I say? I am a tad jaded after our experience with the same school and same principal!)

So there you have the update on N and his family. By the way, M asked me to pass along her thanks for the prayers and good thoughts for both the school situation and for her husband’s upcoming deployment.

Read Full Post »

In the moonlight
All the words you say
Make it relatively easy
To be swept away
In the half-light
Can we trust the way we feel
Can we be sure that anything is real?

“Moonlight” by John Williams, Alan Bergman and Marilyn Bergman

Seems lately that a few of us have been off-kilter, out of sorts, unable to concentrate, feeling disconnected, or overwhelmed. I’ve been ill the past week or more with some gunk that has decided to move in for a longer stay; I’ll be calling my doctor Monday to ask about a sinus infection and bronchitis. Frankly, I’m surprised it’s taken this long for it to hit me given the stress of recent months.

But lately, I’ve been feeling odd too and I can’t say it’s all (the cold) in my head. I try to write about things —fairly significant things about Nik and his health, progress, or development —and I can only get part way through. I seem to get so easily distracted that I lose my train of thought and either fall out of the groove I was in or I take off in a completely different direction. My writing lately has felt more like “stream of unconsciousness” than anything else.

Sure, it could be the gallons of cold medicine I’ve been imbibing (liquid daytime and nighttime meds in case you were thinking something more exciting!). But tonight, on my way home from the grocery store, I discovered the real culprit lurking in my neighborhood.


Seriously, it’s been a strange time in my head lately. So many things going on with Nik, my being ill, Thanksgiving and the approaching Christmas holidays, and Nik’s fourth birthday. I feel like I haven’t had a chance to catch my breath and when I do, I can’t seem to articulate the thoughts I want to share.

So bear with me as I disentangle my threads of thought and try to regain my sense of order and control (well, in some small measure anyway).

Here’s the first of a few installments—

Nik’s speech therapy:

I’ve alluded to this in previous posts. We’re at a crossroads with Nik’s therapy; he’s not making any discernible progress as far as I can see. There are no new sounds or gestures to communicate specific intent or thoughts. And yet, he does communicate pretty clearly. Niksdad and I are the only ones who know how to interpret it though and that’s not a great thing for the longer term.
Nik’s current therapist, Miss K, is the same one that worked with him (and I use the term loosely) last year at school. She left in September to go into private practice. At the time we started seeing her, I didn’t realize that Nik’s former therapist through Easter Seals, Miss M, could still see him. Since we had already made the arrangements with Miss K, we started to see Miss M for feeding therapy; she has a sub specialty in that and we knew Miss K wasn’t equipped to help Nik with the intense oral motor therapy he needs for eating skills. I also thought the exposure to different people would be good for Nik.

Well, here we are a couple months down the road and Nik is making tremendous strides with feeding but not with communication that others may be able to understand. I think Miss K doesn’t have the experience to handle a kid with the complexities of Nik’s background; she’s only one year out of her clinical fellowship. Miss M, on the other hand, has been in practice more than ten years and has seen all sorts of kids through early intervention. After an entire school year of working with Nik, mostly in group settings, Miss K still doesn’t quite “get” him; she doesn’t see or understand the autism and she just doesn’t connect with him. Miss M has the advantage of having worked with Nik in our home for more than a year. Nik adores her and will do nearly anything for her —ok, except eat outright and talk. But the relationship they have is beautiful; Miss M gets him on so many levels. She doesn’t necessarily see or understand the autism piece but she engages Nik in a way that few others can. They laugh and clap. they take turns, they make pretty good eye contact. Miss M has made such a lasting impression on Nik that he initiates playing a game with her that he remembers from more than a year ago.

So why isn’t Miss M seeing Nik for his speech therapy you ask? Good question. She doesn’t have any more time slots available —though she says she could do both feeding and speech combined in the two sessions a week we already have. I don’t have a sense of how in tune she is with augmentative and assistive technologies. I guess I need to ask her. My fear is taking away that extra session a week that we have been using to see Miss K and not making sufficient progress with augmentative devices or strategies to help to communicate with others in a meaningful way.

As I write that, I realize how silly it sounds. It boils down to whether I want to spend an extra hour each week (including travel time) to see a therapist who totally doesn’t get my kid and who doesn’t make me feel heard and respected —not that she has made me feel overtly DISrespected—and not have any discernible progress to show for Nik’s and my time. Or spend less time but with someone who not only totally gets my son and loves him as much as her own child but who also makes me feel like I am the expert on Nik and who is genuinely interested in what insights and observations I may have to share.

The alternative to either scenario is that I spend roughly three hours each week (an hour and change travel time each way, door to door) to see yet another therapist who may or may not “get” Nik or engage him the way Miss M does. I’m not sure that’s a chance I am willing to take.
I guess when I see it in writing it’s kind of a no-brainer. That’s one of the many things I love about blogging; it allows me to stop and try to put my thoughts in order and —voila! The answer was right there all the time.

Thanks, I needed that!

Read Full Post »

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!

Read Full Post »

“I think we all feel like that, sometimes: forgetting that we have exactly what we need already within ourselves, if we can just believe in it.”

Those words, about courage, from Jennifer’s post today on Pinwheels really struck a chord with me tonight. It’s been a very trying few days here in NiksHouse. I feel like the dang centipede is tossing its shoes again. The up and down, back and forth of emotions and activities is exhausting. In spite of my working out regularly and trying to eat healthfully, I just feel like Dorothy must have felt in the poppy field. I simply want to lie down and sleep and let it all go on without me.

But I cannot. I guess that’s the cost of trying to be a good mother —no, of BEING a good mother. There isn’t much rest or respite and we have to take it where and when we can find it. I find mine online with you all. I’ve been jonesing to write for the past couple of days but haven’t been able to find the time. Now, it feels like I need to cram a lifetime into one post. Sigh… Did I mention that there are some incredible moms out there who simply must have ESP? I’ve gotten some wonderful emails from a few of you…just checking up on me. It means the world to me. More than you know right now. I may not answer each comment or email but PLEASE know that they have all touched me in the heart.

So I’ll start with the easy stuff first — Nik is having surgery Friday to remove the tube from his right ear. We have no idea if it will make any difference but we sure hope so! The episodes of rubbing and crying are increasing in frequency. Poor guy took THREE HOURS last night to cry himself to sleep. Nothing Niksdad or I did seemed to help at all. It was the tug-of-war with our hearts —the frantic cries and clutching at us for comfort, coupled with the pushing away because Nik was so tired and just wanted to sleep. Unfortunately, we couldn’t give him any Advil to help him make it through the night —too close to surgery. (Anti-inflammatories thin the blood…not good before surgery!)

We survived the bumpy night and made it through the way-longer-than-it-ever-should-have-been pre-op appointment today. Nik must have remembered last weeks’ EEG (I didn’t write about it…it was awful!) where he had to be strapped onto a papoose board and restrained for nearly an hour. (I cried when he finally passed out from exhaustion.) He had THREE major meltdowns in a two hour span while we were at the appointment today. Nothing I could do to help him except try to distract him from the nurses in their scrubs. Who knew “white coat syndrome” could start so young?

Back home for lunch, the rest of the day went great. Off to see Miss D and Miss T —our new favorite therapists. Nik is doing so much better and really making some wonderful progress. I could probably write several posts about that by itself. Suffice to say; lots of good things are happening in terms of his attention span, starting to play appropriately with some toys (instead of throwing everything), more social interactions, generally a bit calmer. You know, only Energizer Bunny to the 3rd degree or so.! Nik is communicating a bit more using some hand-over-hand gestures to put our hands where he wants them. For example, he is a smarty-pants and can buckle the lap belt on his chair, his stroller, you name it…but he cannot always open them. His new favorite game is “I buckle, Mommy unbuckles;” he clues me in to the fact it’s time to play by guiding my hands to the buckle —and wont’ let go until I’ve done my part, repeatedly! He is beginning to respond appropriately to things like laughter. He has the greatest little giggle.

So I’ve been having such a wonderful time thinking of all the fun Nik and I are going to have when he’s not in school this fall. Not that I had any specific things planned, mind you. It’s just the sense of freedom and relief since we made the decision to take Nik out of school. I was in the craft store the other day and walked past all kinds of finger paint supplies and fat crayons and play dough…and I had to stop myself from buying it all on the spot! I realized that being able to work with Nik at home will help fill some of my own need to do creative things. It might not look quite like I imagined, but —really —it’s the act of creating that is so crucial and that I have missed so much lately. I was getting really excited about home schooling.

Then the shoe dropped. Without getting into the details, Nik’s only insurance is Medicaid. For which we have been incredibly grateful; they’ve covered everything that we’ve needed so far. Until now.

Miss K, the admin at our therapists’ office, told me yesterday that they had gotten approval for only a limited number of weeks. Not a big deal; it’s easy enough to get new prescriptions/referrals every so often. The kicker, though, was the note on the bottom of the authorization form “…then transition to school.” I felt like someone had kicked me in the gut with steel-toed boots. Not the sharp stab of immediate pain, but the dull ache which builds and builds. By the time I got home with Nik, I was in a state of near hysteria. I held it together long enough to give Nik his lunch and get him down for a nap. Then. I. Lost. It.

I pulled myself together after Niksdad and I talked about it. We decided not to get too upset —well, a little is good —until we checked it out with the insurance. Maybe we misunderstood. Uh, no, apparently not. I talked to someone from Medicaid today and explained the situation and that we had not intended for Nik to return to school because he had not made any progress. The response I got was “Once a child turns three, it is the school district’s responsibility.” Ohhhhhh Kaaaaaaayyyyy.

So here I am with a 3 ½ year old who functions, for the most part, like a 9-15 month old —with some amazingly age- or near-age-appropriate scatter skills —with concomitant medical issues whom no one wants to take responsibility for providing the necessary and appropriate services. School says it medical; Medicaid says it’s educational. Mama says its bullshit!

Niksdad and I both agree that school is not the place for Nik. In the year he has been there —receiving his “30 sessions per year…minimum 15 minutes group, consultative, or individual…” in each of his services — Nik has made NO MEASURABLE PROGRESS. Now, I don’t say that to be dramatic. We have evaluations done by different professionals at different times throughout the year —including the recent evaluations done by the new OT, PT, and SLP. Every single one of them puts Nik at exactly the same age equivalent as the other reports. NO MEASURABLE PROGRESS.

Now, Nik has certainly made some progress, most of it very recently, but he continues to fall further and further behind his peers. This child whom every professional that has worked with him acknowledges is “incredibly smart,” “Very determined,” “a great problem solver” among many other things. How is it possible that this child then has not progressed? I guarantee it’s not for want of Nik’s trying!

So now we are in a holding pattern. In some bizarre turn of serendipity, I did not send the letter to school yet to withdraw Nik. Whew! I’ve gotten past the feeling of being kicked in the gut but not past the anger or frustration; I will need both to fuel me when I want to quit because I am tired.

I’ve reached out to some parents I know in my area who are very good advocates. Both have children with special needs who are significantly older — 18 and 22 — and both advocate for other children through advisory councils and through the child welfare system. I am hopeful that one or both of them can give us some guidance about our next steps. I am also looking in to finding an attorney should the need arise.

So here I sit, preparing for yet another of Nik’s surgeries. Oddly enough, it’s barely even registering on the anxiety scale. I don’t know if that’s because we are truly relaxed and know that Nik will come through with flying colors, or if it’s because I am so wound up about the school/insurance conflict. Whichever it is, we’ll take all the prayers, good karma, love, hugs, and laughter we could get about now. Our well feels a little dry.

Read Full Post »

The sun will rise as sure as there’s a day time
Don’t worry ’bout a thing….in time you’re gonna see
Your life is everything you make it
The hard times never last
Trust in your heart and don’t look back

“It’s Gonna Be Alright” (The Cheetah Girls)

As summer begins to wind down and the start of the school year is around the corner, my heart has been heavy at the prospect of Nik’s upcoming IEP. Niksdad and I already know that school is not willing to budge on some things —most notably a one-on-one paraprofessional for Nik. Their stance is that Nik is at an age where he needs to be able to generalize his learning and not rely strictly on one individual. The concern they raised, in our non-IEP meeting in July, is that Nik is smart enough that he may find ways to not pay attention to the actual teacher but look to his para for validation instead. In addition, the principal feels very strongly about educating the entire staff about Nik’s subtle seizure activity and promises that there will always be eyes on Nik. The principal is new to the school as of early July so I have to cut him some slack for his incredible naiveté. I know from first-hand experience that there are not always eyes on Nik and that there are times he has been virtually ignored by “seasoned” paras who were sitting right next to him in circle time —singing and gesturing their hearts out as Nik sat between them, ignored and not participating.

I know that my son has some very significant educational challenges and that the teacher really believes Nik has incredible potential; she just doesn’t have a clue how to “unlock it” (her words). I have tried my best to be helpful in relating my own observations and insights about what has worked with Nik. I’ve had countless conversations with the OT about my suspicions about Nik’s sensory issues being at the root of his extreme attention and regulation challenges. For whatever reason, my words seem to fall on deaf ears. This has often been the case with medical professionals as well; Niksdad and I persist and persist until, finally, Nik reaches such an extreme state that the doctors give in and investigate the things we’ve asked them to. Many, many times we have been proven right.

Righteous vindication doesn’t feel very good when you are watching your child suffer. Or regress in skills or fall further and further behind his peers when he once made such rapid progress that therapists were amazed at how quickly he learned.

With those things in mind and with the rapid and marked progress Nik has made in just a couple weeks of intensive work with his new OT and PT, Niksdad and I have decided it is time to pull Nik out of school. I’ve checked all the legalities with the Department of Ed (DOE); Nik isn’t required to be in school until he is five. Even then, it doesn’t have to be a public school, just “an educational program.” Our situation is such that Nik qualifies for significantly increased services through his Medicaid so we don’t have to worry about too many out of pocket expenses for therapies. As it is, the insurance has already authorized a 100% increase in his OT (from one session to two per week), a 200% increase in his SLP, and a 300% increase in OT. This means that Nik will now be getting the level of services which were recommended by multiple independent evaluations done over the past 12 months.

Sure, we could keep Nik in school and add the therapies on top of that, but we have to weigh the cost of that against the quality of life for Nik and for us as a family. He is simply too young to be spending every waking hour in some sort of rigidly structured activity. Seven hours of school each day —20% of that spent confined to a chair for tube feedings, plus another two hours of therapy daily (including travel time) —home just in time for dinner then bed (since Nik doesn’t nap much at school and cannot stay up much past 7p). Then throw in the time missed from school for doctor’s appointments…It’s just not realistic to expect ANY 3 ½ year old child to tolerate that much without some serious PLAY —let alone my little Energizer Bunny to the Nth Degree. The more we thought about it and talked about, the easier the decision was to make.

To say that Niksdad and I are excited at the prospect of Nik’s inevitable progress would be a gross understatement. Plus, the idea of not having to wrangle with school over every last little thing —the classroom staff about feeding, nap, and communication about Nik’s day, the school nurse over every last little tweak to Nik’s tube feedings, finding out the hard way that they ran out of diapers or some other supply for Nik, etc —feels like another headache mitigated.

I know it will be a challenging transition for us —Niksdad begins his nursing clinicals in another couple of weeks and will have very little free time (especially after putting in hours at Home Depot, too!) and I may feel slightly (a lot?) overwhelmed at first. But it also feels a bit like I finally get a shot at the “new mother bonding” that I didn’t get when Nik was born. By that I mean that he and I will sort of feel our way through it together. We’ll figure out a new schedule, new activities and adventures. I have already begun to set up a regular therapy schedule for Nik — the same time each day for OT and PT —and we’ve gotten insurance approval for the developmental playgroups, too! Imagine —built-in play dates! I have visions of finally being able to do the things that “the other moms” get to do —Mommy and Tot swimming, music class, toddler story hour at the public library. Walks in the park with other moms, the occasional shopping trip with a friend and her kids — things we couldn’t even dream about doing before because of Nik’s school schedule. And it’s not like I will get another chance at this gig…

I think I may become less angst-ridden about my own future as well. Niksdad and I had a long discussion about him being the sole income earner; he finally gave me “permission” to let go of my guilt about not contributing financially. I no longer have to think about rushing out to get a job —any old job for income — unless or until the time comes when Nik is ready to go back to school and I have an idea of what will make me happy. Have I mentioned how much I love and appreciate my husband? I DO.

I will no longer have to schedule my workouts around Niksdad’s or Nik’s school/work schedule quite as rigidly. I now have the freedom to put Nik in the childcare area while I work out and get a little “me” time. What a concept! I know my own mother is anxious that I will become more overwhelmed and exhausted, but I truly feel this is the right decision for us.

We will figure it out and find a new equilibrium. Just as we did in those awkward and terrifying first days at home after our 209-day NICU stay. I think we’ve done fine so far. In fact, I’d say we’ve done very fine, indeed.

Read Full Post »

So much to write about and so little time lately…

Nikshouse is healthy again. HURRAY! Thanks everyone for your good wishes and thoughts. Nik is completely over his summer cold and I’m on the tail end of mine —having sounded like a cross between Greta Garbo and Kermit the Frog for a few days there. Believe me, it wasn’t pretty! Nik’s stoma (g-tube site) is healing nicely and doesn’t seem to bother him in the least now. If only we could figure out the ear thing. If you’ll pardon the pun, it waxes and wanes; sometimes it seems to hit out of the blue and others we can sort of predict when it’s going to be a bumpy stretch. We’re somewhere in between right now as Nik slept through the night last night for the first time in a while. Alas, Niksmom did not.

Blame that Potter kid! I finally laid my hands on a copy of the new HP book and simply couldn’t put it down until the wee hours. I feel like someone might feel after being zapped with a cruciatus curse. I have no one to blame but myself. Sigh…it was worth it! LOVED the book. I won’t spoil it for anyone by discussing it here.

Let’s see, where do I begin? Wow, all of a sudden the lyrics to the theme from Love Story started running through my head. Think about it; they’re very apt when applied to a parent-child relationship. But I digress.

Nik had his evaluations with the new PT, OT, and SLP on Monday and Tuesday. We went for his first sessions this morning and have scheduled something at least three days a week for the next few weeks. I am so impressed with the therapists already. They zeroed right in on some of the key things we’ve been concerned about within the first few minutes of the evals. The greatest part is that the OT, Miss D (not the same Miss D from school), wants to spend a great deal of time working on just sensory stuff with Nik. Hallelujah! We’ve been asking for someone to do that all school year. She’s even contacted the pediatrician about increasing the number of OT sessions per week so she can work with Nik before each of the OT and Speech sessions.

The physical set up at the facility (I’ll call it the “gym”) is wonderful. Something for nearly every level of ability to accommodate all sorts of abilities while providing challenges, too. Today, Nik actually climbed up a ladder (with some help from Miss T, the PT) to a sliding board. Not steps…A LADDER. Who knew he could do that? Certainly not I. There are separate rooms for quieter, more focused activity which is where Miss D went through a pretty rigorous brushing protocol and did lots of joint compression before trying some vestibular activities with Nik.

We’ve made an interesting discovery. Rather, I should say we’ve confirmed something we suspected. Nik has some pretty significant insecurity about not having his feet or his trunk somehow firmly grounded. Miss D put Nik in the vestibular cradle/net swing (which is only 6 inches off the ground) and he completely freaked out. Screamed himself purple, thrashed and bucked until he got himself out of the swing. This cannot possibly be the same child who used to adore being cradled in a blanket and swung through the air by his Daddy, can it?

Nik had the exact same response when he was placed on one of the large therapy balls. I know it is something that the PT and OT will help him with —developing a stronger sense of where he is in space, but it was excruciating to watch him in such a panic. Mind you, neither Miss D nor Miss T persisted in any activity once it became clear that Nik was truly panicky. But the wildness which overcame him was instantaneous and heartbreaking.

On a happier note, Miss D and Miss T both feel that the sensory work will help Nik a lot. They both said they saw a significant change in Nik’s posture and muscle tone, as well as his ability to stay focused on an activity for longer than a minute, after a good 20 minutes of sensory activities. I did see somewhat of a difference. I guess I was just wishing that it would so immediate that Nik would remain calm and focused long enough to eat lunch when we got home this morning. No such luck.

Our eval with the SLP went well, too. Miss C, actually met Nik last summer when he started at school. She worked with him once or twice before she left for one of the charter schools in our district. She works at the school and the “gym”. She’s friendly and very informative. She is going to be working with Nik on some oral motor activities as well as looking at communications methods for him. We all feel that PECS is not really an option for Nik right now as he tends to put everything in his mouth (including the cards). Plus, Nik’s secondary “obsession” after doors? VELCRO. Miss C has her work cut out, for sure. We told her all the things we’ve tried for oral motor facilitation and she was floored. Hopefully, though, with the help of Miss D and her bag of sensory tricks, we might make some headway. Stay tuned!

Nik is making tremendous growth gains lately. My little guy who was once not even ON the growth charts —adjusted for prematurity or not— has made some great catch up growth. According to the nutritionist, Nik is now hovering somewhere around the 90-95th percentile for body mass! It’s all muscle, I swear! I watch Nik’s body lengthening and his legs getting more muscular; he’s losing even the toddler look he’s had about him. My baby is turning in to a small person, a beautiful boy. I still watch him sleep at night and see glimpses of the baby in his posture —but even those are becoming fewer and fewer.

Nik is now taking a few steps on his own throughout the day. A few weeks ago he would take a step or two then his eyes would go wide —as if he wasn’t quite sure how he did that —and he would plop to the floor on his bottom. Not so anymore. Now, he actively cruises along a wall and then lets go to take a step or two, sometimes three or four, and then launches himself toward a target —a wall, a door, a leg. Sometimes he will start to sit then stoops instead and places his hands on the floor. He cannot yet stand up without holding on to something but I see him diligently figuring out the mechanics of the thing. My days of even the slightest hint of peace are numbered!

Nik is also communicating so much more. No words but so many more consistent —and affectionate and funny —gestures and sounds. Now when putting on shoes and socks, instead of simply sitting between my legs, Nik must climb onto my lap and lean as close to me as he can without actually getting into my clothing! When brushing teeth or singing our bedtime songs, he does the same; he even admonishes me with a little squawk if I am not singing the right words or if I am singing too loudly. When I comply with his wishes, he sighs and settles back against me. Or he’ll turn his little face up toward mine and smile at me with a twinkle in his eye. Yep, gets me right THERE every single time. I kiss his forehead and give him a squeeze.

We don’t really need the words, but I long for the day I might hear his little voice say “I love you, Mommy. I’ll meet you in Dreamland.” I know that there are no guarantees in this life —for anyone —and I need to accept that he may not ever be able to articulate those words in the way I would hope. That is not to say I am giving up on the idea of Nik talking —very far from it. I will make sure he has every possible chance to learn to speak; I just won’t make it the be all and end all. That Nik has a means of communicating is far more important to me than the method used.

I have lots more on my mind but I think I’ll save it for another post (or two?). As my dear friend, Mary Poppins says, “Enough is as good as a feast.”

Read Full Post »

Older Posts »

Follow

Get every new post delivered to your Inbox.

Join 478 other followers