Friday, December 7, 2012

Learning still

3 years ago Robert was diagnosed with Asperger's (a high functioning form of autism)...  I started looking into it, not really sure what to do to help.  We had started to virtual school him a few months before we got the diagnosis.  The diagnosis explained a few things about Robert's behaviors, and possibly our own.  
          Some days were rough during the virtual school experience.  Two months into the first year I find out I'm pregnant, and from the day I got the plus sign on I was miserable, not severely, but enough not to have the energy to be of much help to Robert.  I left Robert to his own defenses a lot... as long as the work was getting done, and his grades were good I didn't bother him.  Robert felt that he didn't have to do the book work... partially my fault because we didn't do the spelling much because it wasn't a grade.  When we started the second year I had every intention of being on top of things, making sure he did the work and understood what needed to be done to learn... well it was a constant fight... do your work, show me your work, why did you get this bad grade... my stress levels just kept going up and up.  Ken got sick in March and was able to see what happened with us daily as I tried to get him to get the work done... and after much discussion we decided that back to regular school he would go the next year... so I began the email campaign to get Robert ready for middle school... I fought with the virtual school to try to get them to add the Asperger's and ADHD diagnosis to his IEP... well they kept giving me the run around, and finally it was decided that it would be best to have the new school do the diagnostic tests when he started 6th grade.... oh my fun fun fun right?  Mean while at Tommy's ARD in March, they tell me that they want to test him for autism/Asperger's... so more fun.  Well in May I get the results of the testing for Tommy... yup school says Asperger's.  
          Well summer started, and I continued to research, thanks to the school I found Any Baby Can, and got more information, and during my own researching I found a great group of moms that I have been able to connect with to get support... women that know what I am going through, and that I can relate to.  I was SOOOO worried about Robert going back to regular school...  then I s\return to the email campaign  I have a letter written out to give to the special ed person I had been emailing... wanted to know when I could give it to her...she replied that she was now a vice principle... so I started emailing the new special ed person... trying to get everything nailed down as much as possible before school started... got the letter delivered had a staffing ARD, classes set up, week later classes changed to a coteach environment with a class in social skills, testing was done, inconclusive... more testing.. yes he does have Asperger's... ARD basically where they said they wanted to see about Adaptive PE... waiting on another ARD in January for that.
          I've done some classes at Any Baby Can, and I am currently doing a PALS training course so I will be better prepared for the next ARDs for both of my Aspies :)  Since I've never had an NT kiddo I am so paranoid about Austin.. is he doing what he should be doing at this age... is the dancing he does something I should be worried about... so he will be getting evaluated soon by ECI to make sure he is on track.
         I am learning how better to parent my boys, and that it is ok that I have trouble controlling them, because they have trouble controlling themselves too... and the more time I spend with them the better I will be able to help them develop the skills they need to get by.  And be amazed by how wonderful they really are... Tommy with his drawling and building, and Robert with his Bible knowledge, and general love of reading.


acronym translations:
ADHD- attention deficit and hyperactive disorder.
IEP- individualized educational plan.
ARD- admission  review, dismissal (annual meetings of parents and school officials to discuss IEP, goals,          accommodations  and progress.  can be done more often than once a year if needed.)
PE-physical education (yeah I know you probably actually knew that on :)  )
NT- neuro typical... the "normal" person
PALS-Parent Alliance for Learning and Support

Birth Story Robert

Ok... Here is the story of Robert's birth.  I'll start at the beginning... well not THE beginning, but finding out about being pregnant :P  .  I was going to my GP because Ken and I had been trying to get pregnant (or at least not doing anything to prevent it for a few months and still no sign of a baby... anyway my Dr. wanted to do a 3 hour blood glucose tolerance test on me cause she though I might have PCOS (poly cystic ovarian syndrome)...this was October 2000... well that was the first time I had had a yearly exam and not had a pregnancy test done, so when I went in for the glucose tolerance test I asked if they could run a pregnancy test too... They did and a few minutes later they came up to me and said... well you need to find an ob/gyn :)... oh man I was so excited... I asked if I could barrow the phone so I called Ken at work... and asked him if he was sitting down... then I told him.
So I get an ob/gyn appointment scheduled for a couple weeks later...they do an ultra sound, and I find out I'm about 6 weeks along.everything is going well...a few weeks later I am driving to my parent's house, and have a garbage truck back into me...not sure if that had anything to do with how the rest of the pregnancy went or not.
In January we went in for an ultrasound (the one where they can tell boy or girl if you want to know :)  ).  The technician asked if we wanted to know the sex... I said only if it is obvious.  First shot... legs spread wide open... she looked at us and said something like any questions :).... boy and proud of it !  Well at that ultrasound they detected that my fluid level was high.  So they scheduled me to see a perinatalogist  in Houston.  My parents took me to that appointment, we picked me up a large bottle of water so I would have that to drink for the US... we got there I had finished the water, and we waited and waited and waited and I thought my bladder was going to bust!!! we waited for almost an hour past my appointment's scheduled time... finally I went to the window and said... I know I'm suppose to have a full bladder, but I can't hold it any longer... they said just don't completely empty your bladder...Well went in with my mom to get the US done, the dr said that he did not see any physical reason for the excess fluid, but that it could be something neurological, or that he just doesn't have the suck reflex yet... made an appointment to see him in March at his Beaumont office.  some time during all this I went to the hospital (I can't really remember why, but I know that when they were checking me out I was dehydrated, and having mild contractions) that was around 20 weeks I believe.... they gave me something to stop the contractions, and some fluids and sent me home.   At 6 months I was measuring full term...  we went and saw the specialist again, and he said everything was looking ok, and an option we might consider the next time I was to see him (Mid April I believe) was removing some of the fluid.  
I'm still working, neither doctor suggested I take early leave or anything.. just wear comfortable shoes and be allowed to sit down as much as possible.  Early April I had a bad UTI, and my dr put me on an antibiotic.  On April 11, 2001 I was working the night shift.  My manager took pitty on me and let me go about an hour early.  I stopped at the HEB pantry on the way home to pick up a few things (spinach and some other things as well).  As I am going up to the front one of the employees at the HEB passes me and says... wow you look like you are about to pop any minute... "no I still have two months to go" was my reply.  Got home as I drove into the drive way Shania Twain's "honey I'm Home" came on the radio, and I had to sit there and sing it :) .  I get in the house and have to go to the bathroom really REALLY bad... get in there (TMI I know sorry) and pee... I think I'm done, and I go to stand up and am still dripping... so now I am thinking that my bladder stopped working... or my water broke.  Thank God Ken had been sick that week... I called the dr after hours line they told me to go to the hospital.  Ken drove me dropped me off at the emergency room and went to find a parking spot... they took me directly to the maternity floor.    I had one lady asking me questions one lady drawing blood and a third putting in an IV... so much going on I did not even feel the IV or blood draw.  Ken found me finally.  They gave me something to stop the contractions, and the steroids to strengthen Robert's lungs, and told me I was going to be on bed rest in the hospital for the duration... and that when I did go into labor again they would not stop it.  So they put me in a room.  My dr came in to check on me the next morning and let me know she was going on vacation, but that another dr would be looking in on me while she was gone.I got the compression hose  to keep me from getting blood clots... I took blood thinners, and stool softeners.  I had to use the bathroom in a little potty chair in the room (I would have left the door open, and the bathroom wasn't any further away from the bed than the potty chair... but they said no :(  ). I had my blood pressure and Robert's heart beat monitored every couple of hours day and night, blood draws as well.  Ken went back to work on Monday April 16, 2001 (that was the day the stool softeners finally kicked in) Now at the time Ken was working at Spherion overnight.  I had just finished watching Monday night RAW, when I started feeling odd pains.  I pressed the nurse call button (the first time in my 5 days of being there that I bothered the nurses other when they came in the room) "I'm feeling pains, but they aren't showing up on the monitor."  So she came in adjusted the monitor and assured me that she would be watching from the nurses station, and that if the pains became more intense or closer together to call again.  She left the room, I called Ken at work (He worked about 45 minutes away from the hospital).  So he's on his way.  Then the pains start getting kind of bad so I press the button three times before they answer... the nurse comes in and asks if there is anyone I need to call... I say my parents (the funny thing here is this particular nurse lived across the street from my parents at the time :)  ) so I give her the number and she dials it.  My little brother answers and I say "Get mom!"  "are you ok?" he asked... "NO, GET MOM!!!"... a few seconds latter my mom is on the phone half asleep... "Mom... It's time!"  "HUH?"  IT"S TIME!!!"  "Oh... OK! Dad and I will get dressed and be there shortly!"  nurse hangs the phone up and asks if there is anything I want.  I say "I want to go home!" (I meant I wanted Ken) "hun, you have to have this baby first."  a few minuets later I feel this pressure.  I look at the nurse and say "I have to go to the bathroom."  "you need to pee?"  "NO, I HAVE TO GO TO THE BATHROOM!!!!".... The nurse looked under the sheet... sain "No, hun... that's the baby!"  Screamed out the door... get a dr in here now!!!!  Dr came in, gave me a local to supposedly numb the area, then did an episiodomy ... the local HAD NOT taken effect... They got the baby out I heard him cry and the rushed him to the NICU. 12:52 am April 17, 2001...  almost a minuet after they left the room while the dr is sewing me up Ken walks around the corner saying , "Do I need to go home fir the plunger...OH.... I guess not."  once I'm sewn up they let me take a shower... I shave my legs  (I know not too smart after being on blood thinners) My parents get there... and we wait, and wait finally they come and get us to see the baby.  they had had to intubate him because one of his nasal passages was closed off.  he was 4 lb 16 inches long, covered in wires and tubes...  born at 31 weeks gestation.   The next day me and my mom go into the NICU and head over to his bed where there are all these people gathered around... the nurse looks up and tells me to go have a seat, that they were almost finished... well naturally I am freaking out "THAT'S MY BABY,,, MOM WHAT ARE THEY DOING TO MY BABY????" finally they came over and told me that they had to put a central line in to get blood samples from because they could not get an umbilical line...he was intubated for  a week, then the ENT came and looked him over and the nasal passage was just very narrow, not completely closed off.   Robert  was in the hospital for 6 weeks...  during that hospital stay there were several people I knew that either worked at the hospital or also had babies in the NICU.  looking at my 5' 8" 11 year old it is hard to believe he was ever 16 inches long 4 lbs....

Saturday, July 28, 2012

try to post more often

Ok... I am going to attempt to post more often.  somethings may not interest everyone... read if you want don't read if you don't want... not here to please anyone, just want to put out info that I can.

I want this blog to be about my family, and things that we go through. so my next few blogs are going to be over the birth of my boys.  I will then do blogs about things I like, ways to save money, tips on cleaning, dealing with my Asperger's boys and such.  Any suggestions are welcome,  I may even do a blog on how my husband and I got together, our wedding and such :)stuff I don't want forgotten... and stuff I want my boys to know about down the line.  What I may do is a couple blogs a week one over the past, and one over what is going on now... I don't know how I'll do it... but hopefully I will start blogging fairly regular and maybe get on with some of these places that have you write revierws for their stuff and give it to you to use and mention in your blog... that would be nice :)

Monday, February 7, 2011

wow it's been a while

good grief I can't believe it's been so long since I posted... must try to post more often.  SOOOO much going on in our livews at the moment... I found out in October that I am pregnant... opps... :)  so we have #3 on his way (yeah US said boy :/)  this will be our last pregnancy, cause I am getting WAY too old for this... this pregnancy has been a lot harder on me than the other two were...  At least I am beginning to feel better, just want to eat everything in sight...
Well Robert recently got yet another diagnosis... a Chiari Malformation... basically part of the back of the brain that in most people is in cased in the skull is not inside the skull... we have an appointment next month to see a nuerosurgeon to see what they recommend.  Need to call and add that to his SSI case.
Tommy is doing good... his school wants me to have his hearing, and sight checked out... not too worried though... think he is just being male.
Ken is currently going to school to get an associate degree in paralegal studies to get a good job, and is currently looking for another job as well because neither he nor the van can take much more of the courier business...  and as of yesterday we are officially down to one vehicle again...  Right now the plan is when tax return gets here we are going to get him a really good running vehicle, and I will take over the van.  And by the time the van stops working hopefully he will either have a better job, and we can either me take and pick him up on days we have dr appointments, or be able to afford another vehicle.
Me I am looking for energy because there is SOOO much I need to do in the next 20 or less weeks to get ready for this baby's arrival...  Robert is driving me nuts with his schooling, but is doing really well... the true test will be come March and April when he has the TAKS test scheduled... what he does on them will determine whether we try this again next year, or we go back to a regular brick and mortar school... 
Things are going... we've gone through tougher times than this and made it out the other side :)  just got to hold our heads up a little longer.  Tax return should get here on the 15th... so we'll be able to pay the bills up, and get  that vehicle, and such...

Friday, October 1, 2010

New diagnosis and life

Well we finally got to meet with the psyciatrist this week.  They have agreed with the theropist's thoughts of ADHD, and added a possible diagnosis of Asperger's to that.  You might be thinking... "How is she going to deal with that?  Poor thing just one more thing added to the stresses she is already going through..."  but you know what?  it seems a little easier now... I know that there is a reason for the behaviors...  and in turn I know there is a good likelyhood that I also have one or both of these issues myself (everything I read I see myself in a lot)  At first I just kept thinking great...two more "lables" to put on him,  but the more I see myself in the Asperger's esspecially,  the more I think how "normal"  I can be, and know that not ALL of
Robert's problems are just him being a BRAT :).  And maybe not all of the things I did was because I was a BRAT... that thought helps a lot... So I am going to take this and run with all the information I can find and try and help Robert come up coping mechanisims to help him deal with having to be arround other people now and then.  Like the ones I developed over the years....  sometimes it was just a matter of "faking" it (and no I don't mean faking "that".... :P) I mean pasting a smile on when I don't feel like smiling, dealing with changes in a more graceful maner than I did when I was a kid.  If I can get to the point where I am almost "normal"  (yeah I know... me normal? when was that :P) and deal with most things in life... get over the fears I have and do things that I HATE doing... calling people on the phone.  I would much rather email, text, or chat online with someone instead of having to make a phone call... and there are a few things that that just doesn't work with (can't make dr appoinments online...  )  I don't mind answering the phone, but I don't like having to be the one to initiate the call. or return calls either.  more than likely if I do have it (which I'll probably never know 100% yes or no) it explains so much about me... my fear of being late, my not wanting to be passed on the road, my not liking being arround a bunch of people I don't know well and my only having had two jobs (I hate change... and resisted it as much as I could... I'm not saying I never put out applications while I worked at other places, but the only job change was not really my choise... I had to have a job, and the store I was working at closed down).  How will I deal with this?  one day at a time.  so far since we got the diagnosis things haven't been as stressful for me and Robert with school...  the last two days I don't think I've yelled at him at all. 

Friday, September 24, 2010

trying to change

ok I'm a slob I admit it... (and those of you that know me know it is true) but believe it or not it isn't because I am lazy... but a perfectionist... I want it all done at once... and don't know where to start, and once I do get started I get discouraged when I look arround and see what all I have left to do :( so from now on I am setting myself small goals to accomplish in a set amount of time... my goal for this afternoon will be to wash dishes... all the dirty dishes I can find I am going to take into the kitchen and at 2pm I am going to work for 1 hour and see what I can get accomplished (I have a lot of dirty dishes :) ) When I finish a sink full I will dry what I have washed and put them up... there by freeing up more room to wash more dishes :)

I am also trying to get better at the way I deal with the boys. This depression I fall into from time to time makes me quite irritatable... so I am going to do my best to keep myself in a place where things won't get on my nerves as much. Which is really important when I am trying to explain things to Robert about school.

The random ness of life

Things have been going pretty good lately... well we're keeping our heads above water anyway... if only bearly.
Anyway school is well underway, slowly but slowly Robert and I are getting into a groove and getting use to things... right now we are doing block schedualing and it seemed to work pretty good this week... so we'll see how things go :)
I think what we are going to be doing for a while is 4 maths on Monday, 4 English on Tuesdays, 2 Sciences and 4 Texas histories (or it might be the other way arround) on Wednesdays, Thursdays will be Study Island (prep for the TAKS) and 2 ed techs, plus 2 math, and Friday is our light/catch up day with just art and PE schedualed... we'll do any make up work on that day... ie if we don't finish a math or an English wee will finish it up on Fridays... I'll also be giving Rober "quizes" to make sure he remembers what he is doing ;) so if this works out Fridays are going to be virually free days...Where we can go to the zoo, or do fun things (this is the day his 4H club meets, and I think I might try and make dr appoinments for Fridays so we won't have to miss much durring the week)