Frustration

It's been an interesting, sort of stressful few weeks since I last blogged. I truly hesitate to use the word stressful, because on the scale of stress we've experienced, it's not really anywhere near the end of unbearable. So it's difficult for me to come up with the right answer when people ask how things are.
DO NOT GET ME WRONG, I appreciate so much people asking how son#2 is, but it's not a black & white answer. And we all know how much we love to hear "Fine", and go on.
So please be patient with me, if I stutter, stammer or look like a deer in the headlights when you ask for an update.


** Nov. 2 we started a new med--an ADHD med. It appears to have NOT given a bad reaction yet so we're very hopeful. Usually we see a bad reaction to meds right off the bat. He could really use the ability to focus so he is able to learn more of what they can offer at Camelot. So far we have no real progress because they are unable to really get him to focus or give attention to task.

**In our weekly therapy phone call early last week, Lolly mentioned that son#2's "mood med" is given at 8am & 8pm. Now, here at home, when he was doing so well on this "mood med", he was taking it per doctor's orders at 7:30am when he got up & at 2-3pm in the afternoon. You could tell when it was sort of wearing off. And in the mornings he was great about taking it with his orange juice first thing after he got up. So by the time we were getting dressed for school. he was cooperative.
According to Lolly they ONLY give meds at 8am & 8pm. Now, son#2 gets up around 7 or earlier in the morning & goes to bed around 7:30pm.

So I'm thinking, a) Why can't you give it to him in the afternoon because by 8pm he's in bed?! Who needs to be in a good mood in bed? b)Wouldn't it be easier on HIM (and you) if he gets it before he has a chance to get grumpy? and c) He can NOT be the only kid there that needs meds besides at 8am & 8pm. Personally I think this is their way of being lazy about meds. Now if the Dr. says it doesn't matter WHEN the meds build up in his system, I'll go along with it. But this smells of laziness to me--on the part of the nurses. I mean come on, this IS their job description. There's one for every cottage--what ARE they doing between 8am-8pm???

**They clipped son#2's nails & got one too close that bled for a very long time. They acted shocked he wouldn't let them stop the bleeding. I wasn't.
A few years ago, he found a green bean can in the kitchen trash & cut his finger on it. THAT was something of an ordeal. Scary. It bled for over an hour & we chased him around trying to put pressure on it & see how deep of a cut it was. He finally ended up in our bed where he sat still in the bedding long enough for the bleeding to stop. When we had called the EMT's, they had nothing to offer & didn't even approach him to look at it. They blew us off saying it happens a lot with kids & pop cans. By the time we got to the doctor the next day, it was too late for stitches.

Son#2 reopened the fingernail owie the next day & it bled all over again. Even though there's nothing I could have done, it stinks to not be there when your child hurts. Or bleeds. That weighs on me & stays on my mind awhile. He's a tough, tough kid, but he still gets scared.

**Like they had to put him in a "hold" the other day because he came in from outside (on one of our hotter days) and he'd been on a "Fit Walk" in a t-shirt, sweats & hoodie. He got into his room & couldn't get his clothes off fast enough & stripped down. Which he isn't allowed to do. So he got mad, they ended up taking him down to the ground. For a hold--they put him on his belly & one person lays across his arms& one across the legs & if necessary (if they'll headbutt the floor) they have someone hold their head still. He understandably freaked out. (I freaked out hearing this.) and was scared. They realized quickly (Thank goodness!) that son#2 didn't understand what he was supposed to do or not do, so they released him. A worker figured out it was too hot in the cottage & to him and they took care of getting him cooled down.
I had told them in the five hour check-in process the day he came, HE DOES NOT LIKE TO GET TOO HOT. It turns him into the Hulk. I think he gets this from me. And his "Hunger Monster" as Hubbo calls it.

**The other night I called SIX times. The calls are supposed to be kept between 6:30pm to 8pm. Well I called at 6:30--he was in the shower would I call back in ten minutes. Sure--I called back in 15 minutes.
"Ms. S, he's getting dressed, will you call back in ten minutes?"
Sure---called back in 15 minutes---no answer.
Called right back in case they couldn't get to the phone...no answer. Called in ten minutes, no answer. Waited five minutes, called again--no answer.
I stopped by 8pm because I knew he was in bed. THIS is what is frustrating. I can no longer get as many verbal updates from the actual people that take care of him, but when I do call to hear his voice, they don't pick up.

** We did meet son#2's teacher---he seems like a good egg. And he again mentioned our son's lack of focus. Which I told him, has been in the last 3 yrs. He used to have much more attention to things. But he is able to make him work for M&M's sometimes. Which is pretty much the only motivational leverage they all have. But always nice to meet somebody & be on the same page.

**When we visited last Friday night with son#2, we didn't get to see much of him. The therapy session didn't include him. But we did get several things taken care of with Lolly that we needed straightened out. However, we had an hour/half to visit with him afterwards. It can only be done in the cafeteria though. Which was NOT clean. The floor was a mine field of food. And son#2 saw we were there for dinner#2.
With no focus he paces around & doesn't want to sit & play with us. Not that there's much place to play, just tables/chairs. What we noticed were other families coming in & bringing laptops, dvd players and toys/snacks to entertain the kids for the hour and a half. We ended up with son#2 bored & wanting to walk/pace outside in the cold & then going to his cottage early. He knew it was time for snack/movie. But he doesn't get that we can't come in there with him. Very difficult to give up extra time with him, but we are learning.

We go visit this Wednesday the 23rd---and the brothers are going with us. We'll have therapy & then take him out to lunch. He doesn't get to come home for Thanksgiving.
And Christmas is still up in the air. I'm just hoping he's not too bored over the Thanksgiving weekend. I worry the most on the weekends because the staff seems less attentive & like they just don't keep them entertained as well.

So if you're the praying sort, I'd ask you pray for his care givers/staff---that they have patience, love & kindness towards him.
Pray Carson isn't bored, lonely or scared. And that he cooperates & is patient with his workers.
Pray the new "focus med" works & soon. Pray for us here at home that will miss that part of our family over the holiday weekend.
Thank you for caring. Really.