"Interesting" TEAM Meeting..

UPDATE AT 6.15 pm:

Just had a longish talk with the amazing Mrs. C. R. who takes care of Salamander three afternoons/week after school gets out. She validated my feelings and perceptions. In fact, she has similar feelings and perceptions.

And then she brought up several other issues that we MUST work on. Salamander has a few 'topics of interest' that are becoming highly inappropriate considering that he's 10 and will be transitioning to Middle School in a little over a year. I've worked on those over the years, but haven't been consistent enough. It's time to get serious. Also, Salamander's safety awareness, his ability to make 'smart' decisions when put into peer pressure situations, his ability to distinguish between a 'good' friend and a 'bad' friend are poorly developed. Time to step up working on those too....

Sometimes it is really, really hard for me to not 'crumble' when I realize that there is yet more stuff that needs to be addressed .....


Just got back from a TEAM meeting at Salamander's school. My main purposes were to do a 'quick download' on what went well in 4th grade, what didn't go so well in 4th grade, and to hash out the transition plan for 5th grade.

All of the above was covered and Salamander got 'glowing reviews' from all TEAM members involved. And I agree, this has been an amazing year of growth for Salamander. He has gained so much confidence, skill and knowledge; in academics, but much more importantly in his social skills, and emotional development/regulation. There are so many examples and situations that I can list that he now 'gets' and 'gets through' without struggle, hesitation or anxiety. And compared to his peers (and his peers being kids that have similar or more significant neurological challenges/differences than he does) he has made light year leaps. Socially and emotional cognitively he is doing things the school TEAM members never thought would be possible for him (which in my mind once again is living proof to the fact that once you address the medical problems these kids deal with, they DO learn. And they learn FAST!).

And trust me, I am 'over the moon' with how much progress he's made over this past year. And I know he'll continue to progress.

Thing is we're not there yet.

See, I see him in a variety of 'out of school' settings where the set-up is NOT as structured, NOT as predictable, NOT as carefully monitored. coached and guided. And I agree that he is leaving his peer group (and remember: Salamander's peer group consists of kids like himself, with multiple and complex neurological challenges/differences) in the dust. And I agree that within that peer group he is very much liked, respected and looked up to (per one TEAM member: Salamander has really become the leader of his group, in a very calm, nice and gentle way. He's not bossy about it. He thinks things over carefully, makes good suggestions, and the group really listens to him).

BUT, place him in a non-structured, unpredictable, not carefully monitored/coached (i.e. 'normal') 10 year old boy scene, and things don't go quite as smoothly. There are some pronounced differences in how Salamander approaches things and situations versus how neurotypical boys approach things (and yes, I realize that Salamander is NOT neurotypical, hence the differences). In the setting as just described, there continue to be challenges around anxiety, frustration, rigidity, anger management, ability to shift, shared play, etc (no doubt however that he has made GREAT progress in all of these areas).

So what's my point?
I don't know how to explain this, especially to those of you that read this that are not 'immersed in this neurotypical vs neurodevelopmental differences/challenges/deficits stuff'.

I want for Salamander to get to that 'next level', that is being able to get through the unstructured, unpredictable 'normal' stuff WITHOUT needing coaching, prompting, scripts, aides, facilitators, etc. I want, in these situations, for there to NOT be a discernible difference between him and how his NEUROTYPICAL peers do things.

While it is awesome that we've gotten to a point that he can make it through the school day/school year in one piece without any major hick-ups (as we HAVE had our share of bumps in the road this year too), I want for him to be able to get through LIFE in one piece.

Maybe I am just being greedy, but considering the enormous growth I've seen in him this year, I want MORE for him, I think he CAN get to that next level and I want to make he gets what he needs to make that possible.

I'm just not sure school is 'hearing me on this one' though.. They kept bringing things back to a comparison of how Salamander is doing versus his neurologically challenged peer group. In my mind, when it comes to life skills, coping skills, the GRAND SCHEME OF LIFE, his neurologically challenged peer group is NOT a valid comparator. I think we need to compare where he is at versus where his neurotypical peers are at. And then continue to help him acquire the necessary skills to 'get there'.

I am all for teaching acceptance, for having Salamander's world adjust to how HE perceives things (and I will continue to advocate my BUTT off for what he needs and how he needs it and when he needs it). Fact is, at some point, Salamander is going to have to transition into dealing with how the real world works (and that world continues to be largely governed by how neurotypicals do and perceive things).

And I know he'll continue to acquire the skills needed to make that transition. But I get the sense that that will come to rest mainly on my shoulders (and the shoulders of several other wonderful people who interact with Salamander OUTSIDE of the school setting).

As I said, maybe I just want too much....It's just that, he is soo damn close, he's on the fence of life looking in and I want him to be able to hop the fence and join in!!!!


Several TEAM members had a rather visceral reaction to me mentioning RDI as one possible tool to help him 'hop the fence and join in'. One comment: "Well, we think that Salamander is too high functioning and that his skills are too advanced to benefit from RDI." First of all, this comment shows how little they understand about RDI. Second, if I had ever let comments like 'he's too high functioning' deter me from implementing what my gut told me would really help Salamander, he would never have gotten to where he is now. In fact, most of his medical problems would have been left untreated...