Friday, July 11, 2008

Still Kinda MIA...

Sorry.. still not much of substance from me.. Trying to bounce back from my brush/bout with heat exhaustion, tons of work to get done/get caught up on, an few unplanned emergencies...(also knows as *Life as Usual*)

Did stumble across this post by Michelle O'Neill yesterday.... And while I thought many times since reading it about leaving a comment on her blog, I just don't know what to say that doesn't sound trite. So I'll do my rambling about it here instead..

I can so relate, I have so *been there* so many times in so many different settings with Salamander. And this probably won't be a consolation at all to Michelle, but it wasn't until recently that I can actually *drop* Salamander off somewhere for a bit.. or that he can go *off* on his own for a while - like what happened in the water park was totally, totally, totally a NEW thing for him to do. And he's 10!!

Until recently, the thought of having to do stuff without me *there* to help him if needed would create such an overwhelming anxiety that he would either melt down or shut down. And *dropping him off* for a little while in a new setting, new activity? Foggetaboudit... Momma better stay for the first 2 to 3 sessions, and then the *weaning process* may be able to start. Same goes for birthday parties and other social gathering. Salamander needs to know that I am *there* in case he gets stuck (almost like a security blankie.. LOL). I have been able to *get around* the social awkwardness of staying at birthday parties etc by *volunteering* to help. TG I have yet to meet a parent who will decline having an extra set of hands, eyes, ears, feet, mouth etc in keeping 10+ energetic 10 year old boys *in line* (plus it typically alleviates any *food related anxiety* on behalf of the hosts too.. as most of them simply cannot get their heads around Salamander's dietary restrictions).

And oh, that terrible auditory sensitivity/sensory integration dysfunction curse... I am so glad that things have gotten so much better for Salamander in that department. But it has taken (and continues to take) a ton of work. We did a very intense and very lengthy AI/OT program (spread out over many many months for many hours a week). Also, GABA/glutamate balancing as well as sufficiently high magnesium levels are key for Salamander (and Potatey too) in keeping the auditory systems regulated (and every time, during detox or other situations where the whole GABA/glutamate balance is *off*, I see a flare in auditory sensitivities). Salamander continues to schlepp his MP3 player pretty much anywhere. By now he has gotten pretty good at recognizing when noises etc start to bother him. When that happens, he plugs himself into his MP3 player and just 'zones out' for a while. And then, when he feels regulated again, he *unplugs* himself and will join the fray. That too has taken a lot of teaching and coaching.

And ah, participating in summer camps.. I think I've gotten lucky in that respect that our town runs a "Challenger Camp" (and kids have to be *nominated* by their SPED TEAM to be eligible to be included; quite a few of the public school teachers work at this camp for the summer, and all staff is aware of the kids' particular sets of challenges. I even suspect that, for some kids, specific staff is briefed on IEP requirements and all that). Salamander is participating in this particular camp for his 5th summer now, but it has taken a lot of hard, hard, hard work from all parties involved to get to a point that things now run, relatively, smoothly. We continue to have bumps and upheavals and situations that need to be addressed, so it's never a *drop off and he'll be just fine* situation. Too bad he's only eligible for this camp for one more summer next year.. I have no idea what I am going to do after that (as for whatever perverse reason, summer, as well as Xmas, tend to be the busiests times of the year for my business. I think it's because, at the companies I work with, during those times a lot of staff is out (or less motivated.. LOL), so they bring in extra contractors to get the work done..)

Another thing that has saved my butt for the past 4 summers (as well as this one) is *stumbling* over the wonderful Mrs. C. R in that first horrible summer after Salamander was diagnosed.
C, I know you read this blog. I love you and I am absolutely serious.. I do not know how I would have gotten through these past summers as well as the prior school years without you. You just *get* Salamander and have been such a huge help to him, to me, and a lot of other people that work and interact with Salamander. It was absolute *Divine Intervention* that we found each other.

As a closing comment, as I need to get going on work stuff, I worry every single night, after Salamander goes to sleep whether I do enough, whether I protect him enough, whether I can protect him during the, undoubtedly, tough teenage years to come. And I don't know.. I don't have the answers. However, I think that all of us moms that are so involved in our special kids are doing what we can to protect and that we all have an astute awareness of our children's fragility. I am terrified over Salamander's upcoming transition into Middle School (TG I have another year). He too is so fragile (although he is *toughening* up a bit) and he is no where near as savvy and sophisticated as the *average* 10 year old. All I can do there is to make sure that Salamander knows that he can talk with me about anything and to give him plenty of opportunities to talk whenever it suits him (regardless of whether that's convenient for me.. and let me tell you, finding *alone* time with either boy is an enormous challenge..).

And do I worry about how Potatey experiences all of this *insanity* and how he copes and gets through this relatively unscathed? Hell, yes... But there too I do what I can...(and so far he is one of the most *well adjusted* kids in his entire pre-K/K class, so I must be doing something right..)


At 3:27 PM, July 11, 2008 , Anonymous Carole said...

You are doing many things right my wonderful friend! It is such a tricky and delicate balance between staying within eyes view(so to speak) and going around the corner out of sight. Salamander is to be commended for his trials and tribulations surrounding this :).
Thanks for the wonderful praise. I feel so blessed as well...

At 5:09 PM, July 11, 2008 , Blogger Petra said...

Well, thanks!! And the pleasure is all mine, as truly words cannot express adequately HOW much you mean to me (and the boys too)

Everybody (oh yes, I am outing you), carole is the amazing and wonderful Mrs. C.R.


At 5:10 PM, July 11, 2008 , Blogger Petra said...

And truly, carole is being extremely nice and not mentioning all the things I am doing wrong (or have done wrong).



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