Thursday, November 21, 2013

A Clean House and another RANT!

Just finished cleaning my house from top to bottom.  I have to laugh, before when we didn't have any kids, and when we just had Steve, I cleaned the whole house every Saturday because it was so "dirty"  LOL...I had NO idea....NONE!   Now I'm lucky to be able to do that once a month.  But there is nothing better to me than a clean house.  for some reason it fills me with such satisfaction, nothing can match the feeling.  I definitely have the opposite disorder from Hoarding!   Once my house is cleaned, drawers organized, closets neat, toilet cleaned, I can conquer mountains!  But when my house is messy, I can't do anything!  People say they don't mind a messy or dirty house, and I can not relate!  If the house is messy or dirty I feel like my whole life is!  When it is disorganized, my whole life is disorganized.  It's weird and I'm sure there is some diagnosis for it BUT I'm glad I have this particular syndrome because there is a cure for it...a CLEAN house LOL!

Really like all the remarks I got from my last blog.  When I write my opinion, I'm never sure what the reaction will be, will I be blasted?  Will others agree?  It was so much easier when no one read my blog, I could write what I wanted and no one knew !!!   HaHa!  I tend to be a little opinionated...LOL 

Sam has been a lot more himself and he is back to taking naps in the afternoon!  I really think this pill is helping his anxiety!  I love that he is taking naps and being able to relax.  He has always enjoyed a late afternoon nap, then to get up and eat supper, take a bath and go back to bed....sounds good huh?  This is the second day he is back into that rhythm, he did it even when we were in NY.  He had just quit taking the naps just in the last few months when his anxiety level climbed.  I'm thankful for this return to a peaceful afternoon for him again! 

Selah has one last HBOT session tomorrow morning.  We have seen no change but the staff told us the first time to look for change 4-6 weeks AFTER treatment was finished.  Hopefully we will still see some change, please pray for her!


Sarah is doing good taking her medicine.  Such a good girl to take 4 meds 2x a day!  Tonight she was starting to wise up and turned from me, but I kept playing with her and she took it!  Haven't really seen a change in her pooping either.


Our nurse was kidding me with all of them taking meds, I should just line them up and pour it in!

Tomorrow morning we have a meeting for Sarah for services from the public school system....none of the kids have YET to have any services but we have had plenty of meetings.  Today I was told that I have an "adversarial " reputation with the school board.  Really?  Me?  I thought that was quite funny as I have showed them WAY more Grace than I should have regarding getting services started for my three little ones! 

We have been home since last January......I've turned in things, things have been lost., people have changed....I was told that the time they have missed will be made up, I hope so.  They are very out of compliance and I have a feeling that tomorrow's meeting might not go quickly as the Speech evaluator told me she is only recommending THREE hours a week for all THREE children together....  (Sam used to get 3 hours of speech just for himself)  Oh and by the way, JUST because Sarah spent the first 5.5 years of her life in a Russian speaking country, has little to nothing to do with her delays NOW!  She cited the fact because Sarah has such an "intelligential delay" that it really didn't matter what she heard for 5.5 years.... She was a crabby lady and kept reminding me she would not be giving the services to the children for which I am eternally grateful LOL!    So just so everyone knows there is NO way I will agree to 3 hours of instruction for them together as they have hugely differing needs!!!  In fact I usually do not take the little ones into Selah's room just in case they could be getting sick or carrying a germ.  Selah has been so well, we don't have anyone in her room that doesn't need to be there, just in case....


I just get so annoyed...  I tell this story to everyone when I'm dealing with the school system.

 First, my other kids have gone to only two private schools, one where we used to live and one here in our town and I have NEVER had to have any big meeting to deal with anything.  I got along great with both schools and participated in whatever I could and loved the folks teaching my kids.  So I don't have a reputation of being a "trouble maker".  Between Shad and Steve they have a total of 16 years of schooling (not counting the home schooling I did last year with both of them, even in that I was working with their school) so somehow I don't think it is me with the problem! 

 Secondly I was a probation officer/supervisor  for all together 13 years...I got the services my people on probation needed.  And I did it in a timely manner.  For many I tried to get them extra services , things not court ordered in order to help them out or their families.  I wasn't a saint but it was my job and I did it because it was the right thing to do!  And I was helping CRIMINALS, not little handicapped kids!   HOWEVER in my years of trying to get the services my son and now my girls need from the public school system, it has never ever been like that.  People seem to go out of their way to make things difficult.  I tell this story all the time and I'm sure some who hear it roll their eyes but I don't understand WHY the school system wouldn't be breaking down my door to help us out!  I know I would if I did their jobs!  

I had a little hope that I was dealing with all new folks ( evidently the school board moved a bunch of folks around) but I was told today that basically even this group of folks consider me adversarial in spite of me showing them some grace despite them being so far out of compliance that it is not even funny!  Really I have been so burdened down with the new respondsibiites I have that no one has seen what adversarial looks like with me!  LOL  But have no doubt, I can show them!

So the time frame thus far has been....

The "rehab" sent Selah's records and ALL she needed to the public school system in January.  They told me she was ready for everything to be put in places and services started once we got home....This is now November.... (btw the way I told the perky happy lady we were working with NOT to count on anything being in place LOL  guess I was right!)

Then after we got home and the dust settled, I called the SB and found that Sam had been withdrawn from school on August 20 (just FIVE days after the accident) and the notation was that he would be attending school in another state.....WHAT?  On August 20, 2012 the only thing we were focused on was Selah and if she would live, I certainly can swear to the fact I did not ask nor did I agree to him being withdrawn.  And we never at any point has any plans of enrolling him in another state!


So we were told he'd have to be restaffed all over again....everything....even tho he'd been "served" by the SB since he was 3 years old.   (so about 6 years)

So...as I am dealing with LIFE and a very sick little girl in a coma (this was back when Selah was in and out of the hospital weekly at times)  I make an appointment to have a psychological evaluation for Sarah and Selah.  I got a copy of Sarah's, for Selah they came in and looked at her, I've never gotten a copy, never seen anything on it.....

At that meeting in I think early May, I turn in everything to them to register all the kids again.  I gave them THREE folders of things.  I was told I needed to give a copy of Selah and Sarah's birth certificates...

Then school is out...summer is here....August comes and I wait for a call....and wait...so I call.  No one knows what to tell me.

I am told no one can find all the kids registration paperwork....so I do it AGAIN- this is the third time for Selah and second time for Sam and Sarah IF you are counting!!!!  I believe I drop it off at the school in early September....and we still wait.....  OH and the vision teacher just had to get me to contact Dr A's office AGAIN for another copy of Sam's last eye report as it was NOT in his folder!  I brought the report home with me from NY...turned it in....then had to contact them AGAIN to get a copy and now I had to get a THRID copy......  CRAZY!!!!!

Can you see why I might be annoyed?   And that is not even taking into account our history with the school board!  I had a "teacher" walk Sam around a school with a rope tied around his waist like a dog after being told NOT to do that....oh and the school has huge floor to ceiling windows in most classrooms.....  so anyone looking out could have seen this......wonder why I might not be happy?  This is the same "teacher" that brought Sam back to me with a big red mark across his face and couldn't or wouldn't tell me how Sam got the mark....we "fired" that teacher!  But he didn't get in any trouble with the SB that I know of.   Just one thing after another where I have no trust and not much hope in the public school system.   At one point they had a person over the homebound who had a history of being a failed principal of a school that got a F  6 years in a row!!  That person was a "gem" to deal with I can tell you that! 

I am thankful that our insurance covers the kids' therapy because that has been consistent and wonderful.  I comfort myself with the fact that at least they get that and we know how to work with them thanks to wonderful therapists we've had since Sam was a baby.  I've learned so many things that I can use in a day to day situation.   We had services for Sam from Lighthouse for the Blind from birth till he was 6 years old.  The last day his wonderful teacher came, I sobbed on her shoulder as she left!  She was awesome!  The service he got from Lighthouse was awesome and basically they taught me everything I know about blind kids !  We were so lucky to have the same teacher come out for Sarah from the week we got home from Ukraine until the week we left for NY.....  Sarah turned 6 years old when we were in NY so she wasn't eligible anymore:(  Lighthouse expects the school system to take over until the child is an adult and then they have adult related services for them.  They do some teen programs and camps too but not weekly therapy. 

Right now we have a wonderful PT who has a life goal of seeing Sarah walk on her own.  The PT is experienced and just perfect!   I know Sarah has had a lot of growth but I can not help but believe it was our PT who works with her tirelessly that has helped Sarah to achieve so many gross motor skills.  Just today I saw Sarah put her foot on the ladder to the highest slide.  She climbed up and did the slide with just the slightest help.  She has also recently learned how to put herself in the swing.  She walks out with her walker, gets turned around and as long as we hold the swing, she grabs the rope and hops her little butt right into it!  I need to video tape it and put it on here!!!  The first time she did it, I almost cried!  It still blows me away.  Sam can't totally get himself into the swing and he doesn't use a walker!

Anyhow forgive my rant.....I probably use my blog too much as a diary at times! 

Please pray for a family in our town who I just heard about.  They are in the process of bringing their dying 8 year old child home from the hospital.  We hope to be able to do something for the family, maybe send them Thanksgiving dinner or some gift cards....  please pray for this family, we have walked through some dark valleys but this is not something I have had to face.  I can't imagine how heartbroken they must be, I hope we can do something to lighten their load!











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