Wednesday, November 30, 2011

ho hum.....


i guess after all is said and done, i should really not be all that surprised. i think the harder thing to let go of is the fact that maybe they are not personally avoiding me, but rather circumstances in their own lives have taken them away because they are more important than an acquaintance-ship with me. that is cool. i totally get that. but it still hurts. so the woman from the neighboring county? never bothered to call me back after i had left her two messages. and the other one? well, i understand, people are busy and we definitely do not lead normal lives, lol. but i think the one thing that really bothers me is the fact that, if you really want nothing to do with me, just say so. it will hurt a lot less that way...

especially when it leads me to think that it is me and i have personally offended them by trying to be a friend. i am sorry. oh well. i know that God has other plans in store for me if these friends do not work out. it will all be okay
:o)




Tuesday, October 11, 2011

onto the next step...

tuesday i opened my mailbox and fingered through the usual junk mail. then i came across an envelope with a return address as one Stanley Wanglund at the ddso. i was so nervous. i prayed, "God, please, i do not care what type of diagnosis she is given, i would just like it to be positive." at this point in the game i feel i would have a really hard time accepting more negativity...

i searched frantically throughout the paperwork, trying not to read it too fast in case i missed something...then, on the bottom of the last page it read:

"Diagnostic Impression: Autism"

oh man, what a basket of emotions i was at that point...they didn't diagnose her with Asperger's like we had thought they would, or like we had discussed with John at her appointment. actual, 100% bonafide autism. wow. all at once i was laughing, i was crying, i was shaking. i was trying to text misty and erin to let them know and i could barely type the words out for my excitement.

when i tell my husband, i also tell him that i want to give it to his mother so that she can read that there is concrete proof that i am not crazy after all. well, i am crazy, but at the whole of it, there is proof that i am not lying nor am i causing her to be this way.

long and the short of it is that kylee has been proven eligible for services from the great state of new york due to her developmental disability. i am shocked, really. even though this is what i was hoping for, there is still a grieving process that has to be gone through. with much luck and determination, i am hoping that kylee gets the services she needs to be an accomplished adult...

okay...

so i am highly irritated i guess you could say. i get it. you need it. i need it. no, get your mind out of the gutter, i mean sleep. i didn't get to sleep until around 12. note the time of the post? and no offense meant but, if you're going to come home early from work because you're tired, go to sleep, when you get home. not 2 hours later. don't stir me because guess what? now i will have less sleep than you in the grand scheme of things, then i will be too tired to deal with you later. oh wait, now i have to get up and go to the bathroom because now my body and mind are awake. okay, that's done, let's try this. okay, i can still get another hour before i need to get up with kylee and start my day. nope, no luck thanks to the dog who is constantly shaking the bed and taking up the room on my side.....*sigh* guess i'll just get up now. what's one less hour? so, you staying awake now that i am wide awake? oh what's that? oh, YOU'RE sleeping now. nice...."

Monday, September 26, 2011

While I'm Waiting....

yes, while i'm waiting....and waiting...and waiting. i despise waiting. never been a fan of it. last wednesday we had an appointment at the broome ddso with mr lishok for kylee. he said after we were through with our tests that asperger's was not out of the question. well he asked us back two days later for an ados test. after that he said, "i don't see autism but i think it's more neurological." ok, i can accept that. so he gave us a test for dysexectuive function. i can handle that as well.

well, as i began to research this dyexecutive function i first found it's strong correlation with adhd. i began to worry. i do not want some to tell us that she had adhd again. i refuse to accept it. then, as i continued to research, i found that dysexecutive function is a part of the central matter of ASDs. so, who knows? he says she has social skills and she has imaginative play. he's a little more concerned about her sleep patterns currently, so i am thinking that he may want to send her for a sleep study. we'll see...

i really am not sure. i have found that it is quite hard to let go of speculation and come to realize that while i may entirely despise waiting with all my being, i cannot do anything about it. i must wait and see what my God has in store for her....

Thursday, September 8, 2011

2006 with a vengeance

another flood....this one is huge. way bigger than the one in 2006. way more widespread damage. and, add to it that my husband is 40 miles away so i cannot even be with him...not sure i really wanna talk about it just yet....

http://www.pressconnects.com/article/20110908/NEWS01/110908083/Photo-gallery-More-dramatic-aerial-photos-flooding-Binghamton-region?odyssey=mod|defcon|img|FRONTPAGE

you decide...would YOU wanna talk about it?

Monday, August 29, 2011

poor poor pitiful me....

today is my pity party. just because. it's been a collection of two terrible days. yes, there were some silver linings, but not many. yesterday was the last class of our Believing God class at church. i had so many bitter sweet feelings upon leaving. the women i had spent the past ten weeks of sundays with, getting to know them better, i felt reluctance to say good-bye to. the best part of this class was learning that i have made a few new connections because of this class and for that i could not be any more grateful. one of them actually contacted me on facebook. that was a welcome surprise to my day which was just crappy.

well, when i would go off to my class at church, my husband stays home with kylee. all that is ever asked of him is to feed her, get her a bath, and get her into bed. sometimes he'll even surprise me and load the dishwasher. oh glory! well, lastnight didn't turn out that way. instead, she was up late, had no bath, and Lord knows how long she was able to stay playing the 64 while
he slept the time away...i get so bitter at my husband. and, starting yesterday, i've just been on this tyrant....i haven't recognized myself for the past 36 hours. what is going on with me?

everything he does irritates me beyond belief. and not because i don't love him, because i do, whole heartedly. i am just having an issue with the fact that he pretty much just eats and sleeps here. I am the one doing the household stuff. I am the one constantly catering to and taking care of kylee. I am the one who is solely responsible for almost everything around here it seems. i am trying not to be ungrateful but apparently i am having one of those days where i am. my husband is a great provider for our family and i completely respect the fact that he slaves his life away to do for us. what i am having a hard time respecting is the constant lack of reciprocity. the laziness. the "whatever" of it all. which, is ironic because i use that phrase constantly.

but it just appears to be that he really does not care about what occurs here in this house because he is not here to have to deal with any of it. *sigh* like, here we go again. we have been through this cycle several times now and frankly scarlett, it's getting old fast....

don't even get my started on today...i know he's tired. so am i. it's just a different kind of tired. like this evening...here comes 8pm...still no movement from the bedroom...really?! THEN kylee tells me she has no pullups....WHAT?! and you couldn't tell me this lastnight so we could get more while we were out today? THEN he comes from the bedroom and says, "it's not her fault, stop it. she told me lastnight." "oh? and YOU couldn't be responsible and tell me either?!"

i brought home the recliner from mom's today. got home around 630. kept asking him to please come and help me bring it inside. nope. then the pullup incident happened. after i got home i just brought it in myself. whatever. just got so ticked off i guess i used that to get it done.

i am quite venomous at times. it's never meant, but i need to realize that i need to recoil and chill out. it took me over an hour to finally calm down enough to the point where i could even look at him without getting angry...

guess i need to just come to the realization that life is gonna suck and i'm gonna bare a lot of crap i don't want to because of the unfairness of it all, but life ain't fair.

after all, Jesus dies on a cross for me. how is that fair?

why do mothers always seem to get the short end of the stick.....

Sunday, July 24, 2011

Derek Hoare and Ayn Van Dyke

I have been following the ongoing battle of Derek Hoare in having his daughter, Ayn Van Dyke, returned to him. In June of 2011, Ayn was removed from her father's care. Ayn has autism. One of the characteristics of autistic children is wandering. One day, while the family was playing in the backyard, 9 year old Ayn managed to get over the 6 foot fence that encases the family yard. Derek searched frantically for his little girl, then resorted to calling 911 after a short while and turning up no little girl. Thankfully a short time later she was found to be at a neighbor's home. Ayn was returned home to Derek, no injuries, no worse for wear, and all went back to normal.

Normal for Derek's family is hardly a normal that any of us would embrace lightly. He has two other children, boys; his oldest son, Wyatt, doesn't have autism yet his other son, Lyric, does. Derek is the sole caregiver of these three beautiful children.

A little insight into Derek's life with these children include installing deadbolts on the inside of his door so that the children do not leave the home, and installing a more complex locking system on the windows that the children cannot get out through them, either.

Normal life was disturbed for them when four days later, two social workers from the MCFD (Ministry of Child and Family Development) came to his door with intentions on removing Ayn from Derek's care. The original story can be read here: http://www.bclocalnews.com/news/124520804.html#comment-246809275 (just copy and paste.)

The reasoning the MCFD gave for her removal was so that Derek may be less burdened and overwhelmed. They came with a voluntary order for him to relinquish her to them. He refused. They ended up taking her from her school, before they even went to his home. So, in this case, they abducted this little girl.

The altercation proved to be quite heated.

If you go to YouTube's Justice4Ayn channel you can watch several videos which portray this story. After this little girl was taken, she had been drugged so as not to be so violent; put on anti-psychotic medicine in doses so high that even an asult would not tolerate. This little girl is away from her family and out of her routine and that which makes her feel safe. It was reported that 18 days after being taken and crying hysterically, the hospital that had care over Ayn requested a photo of Derek for her to carry with her, which she now does happily.

Since Ayn's placement into custody, Derek has been relentless in trying to bring his daughter home. The current Facebook group: "Help Bring little Autistic girl back to her daddy" is currently at 3,417 members and still going strong since its beginning in early June. The hordes of people in this group and their support and services has been overwhelming. As part of this group, I cannot recall another cause that had received this much focus; this much intent on righting a wrong.

Similarly, as a parent of a child on the autism spectrum, i can relate with Derek's story and share in his concerns for his daughter. It is time to return little Ayn home to her father and her brothers, where she belongs. Join us today on Facebook and head over to the petition site, where 3,023 others have joined this plight, here: http://www.thepetitionsite.com/1/bring-ayn-van-dyk-home/

If you or anyone you know, lives near British Columbia, Canada, can help in any way, please do not hesitate. Contact the Facebook group today. Or, if you are in a position to help in any monetary way, that would also be appreciated. Currently in the works is a bottle and can drive to help support their cause. Lawyers fees are not cheap and Derek can use all the help he can receive in bringing home his precious little girl! That link is here: http://www.facebook.com/groups/www.hyperwallet.com

There are several people doing numerous important things that are helping Derek's case. I understand I am in the U.S. and they are located in Canada, but the stories remain the same. In this advanced age, I am delighted to know that so many people can come together to support a loving father who desperately misses his little girl who was wrongfully taken from him.

Please, join me in support of this cause. Sign the petition, give a few dollars, anything you can do. After all, What Happened to Ayn Could Happen To Any Autistic Child. http://www.care2.com/causes/what-happened-to-ayn-could-happen-to-any-autistic-child.html

Wednesday, July 20, 2011

believing God

i am currently in a women's group at church, entitled, "believing God". this group has been a Godsend for me, literally. let me lay down some background...

this past fall, i had to say goodbye to my best friend of almost 13 years; my dog jake. what a sad, terribly depressing time for me. i was then enrolled in a different women's group, "the power of a praying wife". great class, great teacher; i met a lot of great women in that group. well, this all occurred while attending this class. i ended up missing several weeks, not only because of losing jake, but also because of the weather and partly due to kylee and her behavior. we put jake down on october 26th...hardest decision of my life, and even now i am typing amidst tears...*i miss you my friend*

during this time at church we were also reading through "the story" which basically is the Bible, condensed and put into story form. we were going through it as a whole, all the congregation. because i missed several sundays, i fell behind in this and my group studies. well, let me tell you. satan sure had a stronghold on me then. i fell into a massive depression where i didn't leave my couch for two weeks. losing jake had been devastating and soul crushing. with him gone, there was a huge, empty space in my home. and in my heart. there still is. upon going to bed at night i would bury my face into a stuffed bear i had, because right before i left the vet's office, i grabbed jake's face, buried my face in his, and said, "promise me, when i get to heaven, that you won't bite me for leaving you and say hello to Jesus for me." i left. i couldn't even watch or hold my dog as he left this life. what kind of pet owner was i? even now i still feel the guilt.

slowly, i was getting better. i remember the first night, i had made it 24 hours after losing him. i called a friend because i really needed to talk to someone as my husband was at work...she couldn't talk due to family time. i understood, but i needed her and she abandoned me. that's how i felt. well, that took it's toll on me as well. i withdrew from the church even more. what's worse is she felt bad too, later telling me that she could tell i was slipping away, and as my friend she should have done something. i got angry inside because she didn't but then i realized, it wasn't her fault. none of it was. i had to get stronger on my own because if i never did it myself, i would never make it out alive.

satan really hurt me...we had five major staff members that ended up leaving our church, the most recent being our senior pastor, pastor john. that was my straw that broke the camel's back. here i was, already feeling unloved, unwanted, invisible...and he just kept taking his shots at me, and i kept letting him.

one night i remember praying, "God, please put someone in my path that can help me get back on track. i need to be where i belong." after trying a different church and still missing more services at my own, i finally got to the point where i was alone. down and out. i made a trip to arrowhead, looking for something; anything. i thought maybe i'd find a joyce meyer book-nah, i have enough of them. same went for chip ingram, i needed something new that was going to help put me where i belonged: back at my church with my family. then, as i was getting ready to check out, it hit me. "i wonder..."

so i left the checkout and wandered back to the women's section again. aha! i found it! the same woman we just got finished studying in women's group had a different book that caught my eye. "the power of a praying woman." i immediately snatched up the last copy they had and raced to the front, completing my purchase. i was so excited to jump into it; i couldn't wait. i opened it in the car and started reading. it was shortly after that, when i made it home that i had purchased the study guide, not the book...oops! so i ran to barnes and noble and got it there, and started right into the study immediately upon returning home.

what an eye opener! that book gave me just exactly what i needed at that exact time! well, fast forward a few weeks, things are a lot better...i joined a new study at church, the one i mentioned in the beginning. i was at the tail end of the "praying woman" book, with just a few chapters left. as i was working on the chapter about delivering me from my past, "stronger" by mandisa came on. "the pain ain't gonna last forever, hold on and things will get better, believe me, this is gonna make you stronger."

Praise God, i bawled right then and there! never had a message been so profound to me! the next chapter, "using your gifts" was incredible! the chapter discussed taking your gifts God has blessed you with and spreading your light. at that moment, "take your candle, go light your world" came on. MORE tears! Glory!

i was texting erin through this whole saga, unbelieving my ears...i think i had her crying too!

finally, i come to the last chapter of the study..."you are a new creation in Christ". just then, on the radio, came "you've been remade". holy moly i got goosebumps at that moment! i just KNEW that Christ was speaking to me, slapping me upside the head saying, "duh girl! how many times do i need to show you?" i about fell out of my chair i was trembling so much! Praise God!

since then, we have been doing our new group study and it has been phenomenal to say the absolute least. God has shown Himself to me in so many ways this past year. i just need to take up my cross and follow Him....

it is time...


well...

i guess i shouldn't complain. i have made some new connections in the autism community. problem is i am feeling that, whenever i post on a thread, no one responds after it. but, that's okay. at least kylee's story is getting out there. it's been mega eye opening to say the least. i have learned so many new things just by being in these communities. i am trying my best to get ayn's story out there, but unfortunately, i don't think that anyone around here cares. i've posted (hundreds, i'm sure) of posts relating to it. i am just so sad for derek that he and his family have to go through this.

i joined the asperger's community page. that was a very good move. it has taught me a lot! i am thinking that maybe she does have asperger's. but, it's hard to tell, and i won't know until they tell me so. if i can get hold of someone at the district office to even get me her records, seeing as it's the middle of summer. i know they have to provide records if i ask, even at a cost which is no problem at all. although the only other snag i see is they have up to 45 days to comply with your request...

my problem right now is letting go and letting God...

i know it's all in the Father's hands, but if i seriously have to wait another almost two years, i think i will die. today was a horrible day. i yelled. i haven't yelled like this in a long time and of course i feel terrible about it. this all coming after reading "overcoming emotions that destroy".....ugh.

so, until tomorrow, i will pray some more and wait to hear God's Word on my recent situation, hoping i will accept what He has to say with an open heart...

Thursday, July 14, 2011

hello square one...seems you and i are bcoming quite familiar with one another....

oh boy....i seem to be two-stepping my self back into that same old game of four square except i seem to be the only player. all the others have left, gone home, or deduced the fact that i am crazy and choose not to show up....

STILL no phone call from charlie despite the many i've made to him. conveniently though, the last day i called him which was the friday before the 4th of july, i receive a letter from broome regional stating that they do not feel there is enough evidence to suggest that kylee has any sort of developmental delay and that her eval is going through the "step 2" process. whatever. i guess that means i move on.

today i called hca in johnson city, hoping that they would be able to help me. the woman on the phone informs me that they cannot help my child because of her age..."we don't help children in that age group." really?! ok, square one. again. i am getting so frustrated. i am ready to scream. so she refers me to SUNY. i call SUNY and unfortunately get a woman that has no clue either. wow. the blind leading the blind. that's fabulous.so i call SUNY. oh wait, i already said that, lol. she tells me she can't help me, takes my name and number and says, "it'll be a few days because we get a lot of calls..." ok. i'll wait a couple of days. if i don't hear by tuesday then i will call again. this time i will ask directly for linda's voicemail if she has one, and if not, then i will leave a message directly for her. this is ridiculous.......

Friday, June 3, 2011

groundhog day...

man i love that movie...except when i feel that I am the one reliving it over and over again...
things with kylee have not improved in the slightest. matter of fact the school informs me that they classified her as having autism. okay, i can live with that. what i cannot live with is the constant merry-go-round i seem to be on with them because of this classification. we were referred to the broome regional center for her to be properly diagnosed. well, enter charlie heesh. yep...big help they are...let's see, i contacted them at the beginning of april and STILL have no word! gees! so, i took matters into my own hands and made her an appointment with dr. dempsey. he is a child and youth psychiatrist in vestal. now, he has seen her for five weeks and we will have an answer from him on tuesday. thank God, i cannot stand this waiting! on one hand, i am really hoping that he tells me she doesn't have autism. but, on the other hand, i am hoping she does so we can get her straightened out and get her the help she really needs. this school is running a cracker jack operation at best...the events over the past few days have been much. apparently she kicked another student, i'm not exactly sure, but she ran. well of course, she didn't want to get yelled at! well, it was the matter in which she hid that has them saying that now she doesn't have autism. okay, make up your minds. you're already not following the iep so, what they hey, right? ugh! i am so frustrated with these people!
i am also frustrated with myself though and what seems to be the fact that i am not raising her the way i should be. she is rude and disruptive in school, refuses to do her work, and manipulates her way out of it almost daily. then the speech teacher says to me, "we don't see those behaviors in autism". ok. then tell me, how can I a layman so to speak, go home and google autism and behavioral issues or autism and manipulation and come up with answers that support her behavior? "well, she's very smart and i think that she is manipulating because she knows she can." yeah, she can. and you let her get away with it. like i told the principal yesterday during our wonderful hour long meeting, i need to know where that fine line is between her knowing and not knowing what she's doing. yes, she knows when she's being bad. no, other times she does not. what to do, what to do?
thankfully, i am meeting with dr. dempsey on tuesday and i pray to God that he gives us the right diagnosis. this has gone on long enough.