Sam's latest SPED saga...

Ok, so we had Sam's transition meeting on Wed. morning. First of all, I felt like I was being attacked by the speech therapist he has now, whom I can't stand AT ALL. She is snotty and has totally wasted 2 years of Sam's speech therapy with bullshit activities...she underestimates his intelligence and he has actually regressed in this area, I feel...anyway, the new therapist at his new school is better and I am SO happy he is not having this current one EVER again after this year! Anyway, I digress...his current teacher asked me if I had any concerns and when I brought up being concerned with him being able to make it through a full day, as he gets so exhausted and cranky now, and without having a transition period with half days first at a brand new school, it was like I was insulting everyone's competence..ok, mostly just the speech therapist's...she kept REALLY loudly telling me that "they" (her included) were all SPED teachers and have had kids like this before and that they know what to do with a kid like Sam. Well, Miss Thang, no you don't! She is NOT a teacher, and she hasn't had anyone like Sam before! And she didn't realize that the new teacher admitted to me the other day that they had never had anyone like Sam there before....I REALLY wanted to go across the table at her..I really did, but Brian was also there and he would have been pissed if I had! ;) And then I had his current teacher ask me if maybe Sam was "playing" me at home a little bit like kids do, because they don't try that stuff at school with other people. Oh yeah, my kid is FAKING being exhausted by dinner time even though just BEING IN HIS BODY is exhausting enough, never mind having the demands of school on top of it! It was like, I was nuts for being concerned...oh yeah, whatever! None of these people have ONE CLUE what it is to raise a child with severe SN, so please don't even attempt to judge what I am saying! I just said, "you know what?? Forget it, he'll do full days just pretend I didn't bring it up! Why ask if you don't really want to know???
Anywho, so then they tell us that they recommended that he have a one-on-one aide next year and the higher up guy denied it! I was like, hell no! So I put in a call with the head os SPED this a.m., of course she didn't call me back... I actually ended up meeting with the guy that they said told us no at my school today since he was in the open classroom next door to me meeting with my co-teacher. He said he had never been asked about Sam and that he isn't even the one who makes the decision about aides. He said that he was told yesterday afternoon that the team didn't recommend the aide but that his new teacher wanted it, so that they were giving him one! I was like, what??!! So he is as confused as I am and he will be calling the head of SPED tomorrow himself and finding out what's going on...UGH! One more thing, seriously?? I will update when we find out what's going to happen...

Sammy's Boston visit

We went to Boston on Tuesday and arrived at our appt. an hour late due to getting so extremely lost it wasn't even funny! We finally stopped and asked a traffic cop how to get to Mass General. Thank God he was there! :) (We will NEVER go anywhere without a GPS again!) Then we drive forever trying to find the right parking garage and one that the van has clearance for height-wise. Well we finally get inside thinking that we lost our appt., and it was actually set up as a clinic, and you have to wait for the others ahead of you to go, no "real" appt. times, just guidelines to get you there. Well, they were so far behind, that we still had time to get lunch and feed Sammy. So we finally get to see the dr. and it's just the ear,nose and throat dr. We had assumed that the pulm.'s secretary had set up the appt. for the feeding eval, etc. with the ENT dr. We were wrong. So we went through everything with the feeding tube situation with the ENT and he paged the feeding specialist over to the office for us. The ENT told us that he wants us to TOTALLY take Sam off of the Baclofen (not the 1 1/2 ml Brian put him back on) and redo the swallow study with them in about 4 weeks and also have a big pow-wow with the GI and also meet with the head of their ped. neurology dept. that day too. I am very excited to see a "real" neuro with hopefully a bedside manner that actually knows how to talk to people! So we wait now for yet more appt. times from the office....
The good news we got is that the ENT doesn't seem to think that this an emergency surgery we should be rushing to do (the g tube). He said since he has not had anymore pneumonias, and he is ok for the moment, that we could just thicken the liquids and wait to see what the next swallow study says minus the Baclofen. So onward and upward!
Oh yeah, and we had an xray of his sinuses and they don't look too big, we don't need to worry about them. (I was panicking that that's why he was getting so many sinus infections like Luke when he was little.)

So, we also went to visit his new classroom for next year at Stearns. It's a K-1-2 and it looks great..for my out-of-town readers, it's a small school, but has 2 sub. separate classrooms. We brought him with us and he got to meet the teacher and assistant and principal. (All awesome and very down to earth people that will be great for Sam!) I am feeling good about this placement so we have a transition meeting for him next Wed. and then I guess we get him registered. I am nervous about this one boy in the class who will be in 2nd grade in the class next year who is autistic and is VERY hands-on with Sammy. The teacher was trying to tell him to be gentle, but she said he starts to pinch when he gets excited. He was right in Sam's face and was moving Sam's hand around and was touching his head and starting to get a little rough with him. Sammy just looked at him and laughed because he thought the boy was just playing. It will probably take me a bit to get comfortable leaving him in that situation, but I have to trust that the teacher will take care of it. Sammy seemed to love the kids, especially the girls, of course! He will have the same PT next year (yah! He loves Stephanie!) and a great new Speech teacher. A new OT too, we will REALLY miss Jen! :(
So that's the update for now, we have Brian's grandmother's 90th birthday party on Saturday at a local restaurant and of course we'll be doing dinner for my mom on Mother's Day on Sunday. Busy week! :)