Chat 6-15-2012

Conversation Station as began by 2trees

DS is going camping with hubs and the Boy Scouts tonight. In a way, I'm envious as I'm more of the camper type., but I'm grateful to have a night off of nursing duty from DS's diabetes and sleep disorder. This will be the 3rd respite for me in 6 years! Woot Woot! I'm praying it goes smoothly. Neither of them are too adept at follow-through, or waking up at night for bg checks, but even if they screw it up badly, it is only one night. : ) I'm looking forward to some cuddle time with my younger son and some low-stress relaxing today. Joints are screaming more than usual, but this seems to be par for the course on Mtx day. Maybe the mtx is pretty much dissapated from the previous week? Anyway, it is a beautiful sunny day and I rejoice.

You know that almost without exception most BSA camps have supervision for Diabetics and Nurse supervision???? I know its tough for mama but... Has he gone to the Diabetes Association camps? Also some areas they have camps for Spectrum kids. It has never ceased to amaze me the difference a week at camp can make for these kids (not to mention for mom) That very appearence of some independence does amazing things for "morale"

Long weekend coming up for us. Some how my wife volunteered me to cook for her parents Church pic nic.. Its a fascinating church. The age seems to average 75 plus including the pastor(s). They have more dang fun. But to COOK for that group is something else. It seems they ALL have a special diet..... ( there will be about 60 there)

We're gearing up to leave for vacation tomorrow!!! We have almost everything packed, insurance in place for our new van (holy cow the different in cost between insuring a 1998 caravan and a 2006 12 passenger van!!!), and the only thing I'm really stressed about is the financial aspect of everything. We've had some unexpected major expenses and money may be an issue. I hope my father-in-law keeps his end of the bargain and we don't end up paying extra for the new van.

I'm still doing well. I have lots of pain, but closer to my "normal" amount of pain and not the excruciating pain I felt even last week. I'm moving better, too. I'm really hoping it's the remicade and not pre-vacation adrenaline!!! LOL

Speaking of vacation - I need to get back to work while kids are napping. We have eight here today!

Drove a 12 passenger with kids for years...... Couple of hints. The middle seat COMES out. That seperation can be invaluable. kid riding in the back seat who have NEVER been cars sick, will. Use the rearview mirror on the road to monitor kids (doesn't help with its intended purpose much anyway) Its amazing what they can can do or get into with the extra room. Assigned seats (you already know this I'm sure) The storage under the seats especially with soft luggage/backpacks is incredible but never put a kids luggage under HIS seat.

You will have ball and if its just pre vacation adrenalin, take more vacations... what ever works.

Thanks Lamb, The supervision is not consistent sadly. When ds was first diagnosed at age 8, the kid brought in through the ER that was in the bed next to him at the Children's Hospital of Pittsburgh, was 13, diabetic, ADHD, and went into ketoacidosis, and barely made it through the night. Where did this happen? You guessed it, a boy scout campout. The camp tonight is a unit campout headed up by regular dads on a tour plan through council. BSA youth protection guidelines prohibit anyone over the age of 18 entering the tent of a scout that is not their own child. - NO exceptions. That kinda rules out the 3AM blood glucose checks that are crucial for diabetic teenagers on high adventure outings and crazy food choices at scout outings unless Dad or I are performing them. DS went to his first Diabetic Camp last year (my 2nd respite) in his diabetic history, and was TRULY the only time I relaxed fully while he was being cared for by someone else.. In addition, don't forget, he has sleep disorder issues that had him sleepwalking on a regular basis. So, my life as a Pancreas is destined to continue. Diabetic camp won't take him this year becuase of the sleepwalking history. As for tonight, it is a big deal for me to let him go with Dad. They are both ADD and Aspie! They both forget protocals even when I'm gone for only 2 hours! At least this is only for one night and I won't have to worry too much. At Resident Camp 2 years ago in Laurel Highland Council; Heritage Reservation, my hubs let M go off ON HIS OWN to find his friends. M had been having hypoglycemia the whole time even with 100 percent reduction in pump basil rates. Hubs sent him ALONE, WITHOUT A WALKIE TALKIE, and, you guessed it, M got LOST at the camp. It is a huge camp. I was grateful that M told me only about a month ago or else I may have been typing this from a cell whilst wearing orange.!!! Can you say Buddy System!!? Can you say "kiddo passed out in woods with a BG of 40 and brain damage because no one finds him until an hour later"?
Jeez. I am grateful this is NOT the scenario to have occured, but I am now ever leary of leaving either of them to their own devices for day to day living stuff. They are both the quintessential absent-minded professors, forgetting to eat, forgetting whatever, when they are immersed in their projects of special interest. Sorry if this seems like ranting, I'm not angry, simply pragmatic and resigned to reality. NO ONE takes care of your kid like their mama. I know of a case where a responsible diabetic youth at public school went to the school nurse becuase he was feeling hypoglycemic and needed glucose tablets. The nurse was not at her desk so he woozily sat down and waited. No one checked the nurses office for 4 hours. The child had passed out. The child was found and revived in the hospital, but is now permanently brain damaged. Where the nurse had been, I do not know. I'm pretty chill about many other things and let the kiddos learn from their mistakes on the things that don't matter so much. I'll let them forget a jacket to learn that they should be better prepared in cold weather. I let them pack for trips and campouts so that they get better at it. When a hat, jacket, underwear, or such is forgotten, it is not life threatening. I choose my battles. When it comes to health issues of serious nature....It has to stop and end with me frustratingly because a little mistake with diabetes care comes with too high a consequence.
tntlamb said:

You know that almost without exception most BSA camps have supervision for Diabetics and Nurse supervision???? I know its tough for mama but... Has he gone to the Diabetes Association camps? Also some areas they have camps for Spectrum kids. It has never ceased to amaze me the difference a week at camp can make for these kids (not to mention for mom) That very appearence of some independence does amazing things for "morale"

Long weekend coming up for us. Some how my wife volunteered me to cook for her parents Church pic nic.. Its a fascinating church. The age seems to average 75 plus including the pastor(s). They have more dang fun. But to COOK for that group is something else. It seems they ALL have a special diet..... ( there will be about 60 there)

I hear you.... Will he ever be a candidate for a pump? or does aspy get in the way?

I spent years as camp director, believe it or not the biggest problem was kids who "lie"not wanting to be different

I am so admiring of you for giving your son as many experiences at "normalcy" as you do. learning to be at ease with disabilities, and illness while with peers is hard to do.

I'm old so I don't use the correct terminology too well. imagine the look on some of the child study teams members when I said Mildly retarded... (Almost as bad as the principal who called me to pick up my Grandaughtr who had a clear IEP addressing the situation at hand. I asked him what time school was out, on getting an answer I told him I would be there at that time. He didn't like the answer and tried to push the point, at whichpoint I told him retarded kids do retarded things and hung up. My wife was so proud of me for having a Mommy moment.

With the combination of things your boy has, is he eligible for state wrap around services? We have been fortunate in that our coordinator has managed to get approval to send either support specialist or hab aids along for these things (in fact we have one now pretending to be a Y camp counselor her purpose of course is to make it work for my Grand daughter, Skylar is a master at blending in....)

Tntlamb: love your response while in the Mommy moment!!

M has had a pump for 4 years and it does make things easier, especially for nighttime dosing, and on-the-go dosing. We have the Animas ping that we code in all the carb ratios, sensitivity factors, basal rates etc. and can just use the glucose monitor to check blood, then key in the carb intake for food, and it calculates the dosage, and doses remotely. However, one has to actually Get the BG, Put in the Carbs etc. etc... It does not do it by itself. I fought for 2 years documenting pages of extreme blood glucose history to get a continuos blood glucose monitor to help in id'ing trends and lows especially at night or when he's sick. Sadly, it was never all that accurate, and hurt him like crazy. Doing the insets was torture for all involved. It would wake us up with alarms at night, but would often be wrong as to lows and highs of blood sugar. We cannot seem to find a self-inserting inset device that works on his skin. He's got almost no body fat, so the push and release types with the metal cannulas fail within the day. I have to use mini-tenders which have a wicked needle and are difficult to do on onself. He liked the self inserters, but again, they did not work well. DS is extremely high-functioning in most cases. One not living with him would find it hard to believe he is special needs. He graduated from his wrap, and mobile therapy, and Wonder Kids social skills in PA a few years ago as he was "modeling the appropriate behavior" in the group class and was being used as the example to the other kids on how to behave. For help in NC, I'm not so hopeful. NC is a poor state and only the more extreme cases get the help. M is functioning pretty much at grade level. is eloquently verbal when in a comfortable situation, his sensory issues are barely noticable now except when he's tired, and he has friends who really like him. This is an Aspie mom's dream! I could not be more pleased except if it would be to be done with the pills for the anxiety and sleep disorder he is experiencing and, of course find a cure for diabetes. We've come a long way and had a rough year. He was talking suicide just this past fall and tried to run away. I had to call 911 and everything. He was having crying jags almost daily. Now on Zoloft, lamictal, and Trazadone, he appears to be stable. I've aged about 20 years in the past 5. Nowhere to go but up!

tntlamb said:

I hear you.... Will he ever be a candidate for a pump? or does aspy get in the way?

I spent years as camp director, believe it or not the biggest problem was kids who "lie"not wanting to be different

I am so admiring of you for giving your son as many experiences at "normalcy" as you do. learning to be at ease with disabilities, and illness while with peers is hard to do.

I'm old so I don't use the correct terminology too well. imagine the look on some of the child study teams members when I said Mildly retarded... (Almost as bad as the principal who called me to pick up my Grandaughtr who had a clear IEP addressing the situation at hand. I asked him what time school was out, on getting an answer I told him I would be there at that time. He didn't like the answer and tried to push the point, at whichpoint I told him retarded kids do retarded things and hung up. My wife was so proud of me for having a Mommy moment.

With the combination of things your boy has, is he eligible for state wrap around services? We have been fortunate in that our coordinator has managed to get approval to send either support specialist or hab aids along for these things (in fact we have one now pretending to be a Y camp counselor her purpose of course is to make it work for my Grand daughter, Skylar is a master at blending in....)

Wow what a road.......

I've just got to ask though, how has the move from the NE to south been for him (and you) I'm not discounting the medical help you have got for him but I can't help but believe the culture shock for your whole family must have been HUGE not to mention what it must have been for your son. Time heals a lot.....

nym, hope all goes well, that you have a great time, and feel fabulous!

nym said:

We're gearing up to leave for vacation tomorrow!!! We have almost everything packed, insurance in place for our new van (holy cow the different in cost between insuring a 1998 caravan and a 2006 12 passenger van!!!), and the only thing I'm really stressed about is the financial aspect of everything. We've had some unexpected major expenses and money may be an issue. I hope my father-in-law keeps his end of the bargain and we don't end up paying extra for the new van.

I'm still doing well. I have lots of pain, but closer to my "normal" amount of pain and not the excruciating pain I felt even last week. I'm moving better, too. I'm really hoping it's the remicade and not pre-vacation adrenaline!!! LOL

Speaking of vacation - I need to get back to work while kids are napping. We have eight here today!

We all love NC. The climate is terrific. I never knew that skies could be so blue, so often! The summer is longer here, the winters are more mild. I for one do NOT miss shoveling snow and being cold. The skies in Pittsburgh were grey so often. DS had a vit D deficiency up there. Our neighborhood here is wonderful. A bunch of boys within walking distance and moms who are not drama queens make it a dream. I'm the Kool Aid mom down in NC, just like in PA! We all have been ill less often. My younger son's asthma cleared up. The people are so nice here. There is less hustle and bustle and selfishness here. On the rare occasion when I do go to a dept. store, store clerks are Eager to help you. Even in the grocery stores, the employees smile and are extra helpful. I can tell you how many times in Pgh, I'd be desperate for help in a store and literally have to stand there and yell "DING" to get someone to come and help. Drastic, yes, but this is a tip I gleaned from my Mom. My old neighborhood, though it had playmates for the boys, was too fraught with Mama Drama from neurotic moms who did not have the sense to let their kids be kids and realize that sometimes kids say dumb things to one another. The kids would soon forget and forgive, but the moms were kinda nuts. Homeschooling in NC is a dream. Homeschool reporting requirements in PA were amongst the most stringent in the nation, and rules for special needs homeschooling had even more hoops for us to navigate in PA. In NC, they leave you be. You report once as to your intent to HS, get an approval, and administer standardized tests yearly (which they don't even ask to see). LOVE IT!!!! That said, M did have a 6 month delayed response to homesickness. That, coupled with 7th grade algebra was not conducive to a warm and fuzzy feeling on his part! We no longer have medical assistance (PA had the loophole program for special needs that was not income based), but Hubs better pay helps to bridge the gap. Hubs has a less stressful job now that pays much better. We have a beautiful home with a yard big enough for the boys to do laps in the go-cart and not piss off the neighbors. I never dreamed I could live in such a place. My old home was great, but the taxes in the NE and the cost of living are killler. If the job opportunity would not have presented itself, we'd have been in dire straights financially. It is a bonus for me that I can decompress when hubs travels (about 1/2 of the weeks) throughout the year, and he is always home by the weekend. More later - he just got home. : )

tntlamb said:

Wow what a road.......

I've just got to ask though, how has the move from the NE to south been for him (and you) I'm not discounting the medical help you have got for him but I can't help but believe the culture shock for your whole family must have been HUGE not to mention what it must have been for your son. Time heals a lot.....

Homeschooling in CT is awesome. No rules, no testing, no reporting. I love that my kids can learn in their own way, at their own pace, with absolutely no pressure. I can't imagine what the school system would have done with an aspie four year old kindergartener who could read at fourth grade level but could only write his name.... or the same kid as seventh grader who was reading college level, but couldn't write more than his name. (He now writes awesome, creative stories without prompting and his writing style is unique, but vivid and colorful. :) ) Or how my almost-10 year old would feel about reading, considering she didn't start until she was over six years old, and here they push reading in kindergarten. She went from reading Dick and Jane to Little House on the Prairie in six weeks!

So for so good. I'm tired and in pain, but not in an extreme way. I'm resting with sleeping baby now, trying to figure out what I forgot to pack! LOL

Happy travels to you Nym!

nym said:

Homeschooling in CT is awesome. No rules, no testing, no reporting. I love that my kids can learn in their own way, at their own pace, with absolutely no pressure. I can't imagine what the school system would have done with an aspie four year old kindergartener who could read at fourth grade level but could only write his name.... or the same kid as seventh grader who was reading college level, but couldn't write more than his name. (He now writes awesome, creative stories without prompting and his writing style is unique, but vivid and colorful. :) ) Or how my almost-10 year old would feel about reading, considering she didn't start until she was over six years old, and here they push reading in kindergarten. She went from reading Dick and Jane to Little House on the Prairie in six weeks!

So for so good. I'm tired and in pain, but not in an extreme way. I'm resting with sleeping baby now, trying to figure out what I forgot to pack! LOL

I have great admiration for all who home school their children. It was not an option when my son was school age. One of my friends in PA teaches her little ones with the help of computer lessons, and her high schooler has her studies strictly online. She encourages them to join the Scouts, take gymnastic lessons, karate, dance for the social links to other kids. They all seem happy with the plan!

She is also a mother that has refused to vaccinate her kids. That idea frightens me. I know about the autism being linked to the vaccines, but I also remember kids being in wheel chairs from polio, and how those vaccines changed that. My son had all of his, his kids had all of theirs, the great grandson is also vaccinated, and I am very glad of this.

Well, I'm up too late...again. DS had high blood sugars inexplicably (he's type 1 diabetic) for those who don't already know, and we've been dosing since 11:30P to try and get the number back to normal. Blood glucose number went up, not down, so another dose with a new inset this time, and I will check again at 2:30A and hope it does not roller-coaster downward too much. Sigh. I'm exhausted. This crap always seems to happen on my most tiring days. Today, I was making ribbon sticks for the cub scout olympic games to be held this Thu. The ribbon sticks are almost done! I could not saw the dowels in half with the bow saw too well because my hand was not cooperating. However, I was able to manage a coping saw fairly well. Holes had to be drilled in all 10 sticks and small swivel hooks that close are glued in each hole. Then 4 feet of ribbon needed gromits to affix to the closable swivel hooks. The handles were spray painted white, the ribbons are blue or red. These ribbon sticks are like what is used in rythmic gymnastics. I made them in red, white and blue so they can also be used in the neighborhood 4th of July parade that I and another homeschool mom are organizing. My wrist and hand BURNS, but it was worth it!

Anyway, tonight I just wanted to watch a movie with the boys and crash at the normal midnight time after DS gets his meds. It just was not in the cards so I thought I'd kill some time with the group. We usually homeschool in the summer too, but tomorrow WILL be an "off" day. Papers are corrected, and we plan on hitting the $1 movie tomorrow with some smuggled-in Dollar Store candy!! It is a cool deal. All summer on Tue. or Wed. the Greenville Grande has $1 movies. Last week we saw Journey to the Mysterious Island. It was very cute. My boys got a kick out of the very animated audience who cheered and clapped together at all the best parts. Tomorrow it will be Dolphin Tale. The boys aren't as enthused with this one, but they'll suffer for the candy. LOL

Hi Jade,

Sounds like you are down right handy! Your boys will fondly remember all of these projects you have done for them, and there are always plenty of those.

I know it is always a challenge to provide the kid entertainment and achievements. I started a flash card project for the grandsons, I select math cards for the oldest, then shapes, colors, letters, for the 2 year old. I tape them to the fridge and when they can correctly identify a row, they are rewarded with a $1 bill, as a matter of fact, those cards need to be changed. They can also earn money for doing chores, so they are learning how the reward system works.

I keep a well stocked shelf of kid movies that I have collected over the years, the little one is just starting to be able to sit still through most of a movie, and can be easliy put to sleep in the evening with one.

My praises go out to you for your remarkable 'mothering' of a child who has to be so closely monitored for diabetes, it can't be easy. Your boys are very fortunate to have such a good Mom!

Wow! My feet felt okay today! I could walk without a hobble when the hips did not hurt. First time in weeks they did not hurt! Is the mtx kicking in finally, or is it the gf etc. diet? Who knows? Who cares? I am happy about this!! I felt well enough to go to a Scouting Roundtable tonight! Hoping the feel will feel good tomorrow too, or even better - Friday. I'm excited, yet nervous about a trip to VA for a homeschool conference. It's a 4+ hour drive. I told my friend that she might have to do much of the driving. We will leave in the wee hours Fri morning to get there by 8am. I may just pick up some of those Flector patches for the road! In addition, Fri is mtx dose day. I'll have to be extra diligent on the water consumption that day!

May I suggest you give yourself an extra 30-60 minutes, so that every 30-60 miles you get out and stand up, move around. When I could still go on trips, this is what my Chiropractor advised me to do. You will feel much better, especially since you will be sitting so much when you get there.

Have a nice time, Jade!